Perthes Kids Foundation — The #1 Source for Perthes Disease Info & Community
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The global home of the Perthes community

Every Perthes kid is a superhero — and this is where we all belong.

Where Perthes lives, fights, and heals — together.

This is where the Perthes world comes together to learn, connect, and find hope. Whether you're a worried parent, a kid who feels different, an adult still carrying Perthes, or a doctor searching for answers — you just found your people. Take a breath. You're not alone anymore.

20,000+
strong community
60+
countries reached
19
years of service
Perthes Kids Foundation
501(c)(3) nonprofit · EIN 47-3841121 NORD member · Rare Disease Day partner ALIBER member · Alianza Iberoamericana de Enfermedades Raras
A large Camp Perthes group in light-blue camp shirts smiling together at Knott's Berry Farm, including many boys and two campers who use wheelchairs giving a thumbs up front right
One community, one family
This is what you're joining — kids, teens, parents, and grown-ups who get it, all in one place.
Start here

Wherever you are on the journey, you belong here

The basics

What is Perthes disease?

Perthes is a rare hip condition that mostly shows up in young kids. For a while, the top of the thigh bone doesn't get enough blood, so it softens and then slowly rebuilds itself. It almost always affects just one hip (though in some cases, both), and with the right care, most children get back to running and playing. There's still no known cause and no cure yet — but research is moving forward, and most kids heal well over time.

It's also hard. Perthes can be genuinely painful — and emotionally tough — and most kids have to step away from running, jumping, and the sports they love for the years it takes to move through its four healing stages. That's exactly why community, support, and honest information matter so much.

4–10
years old

The typical age when Perthes first appears in a child.

4:1
boys to girls

Boys are affected far more often than girls.

4
healing stages

Necrosis, fragmentation, reossification, and healing.

2–4
years typical

Most kids heal just fine — resulting in a normal hip and a return to daily activities after treatment.

5–30+
years, every case

Every case is different. Hip damage can bring pain or arthritis into adulthood, and sometimes a hip replacement.

How we help

What we do

Camp Perthes group in purple shirts at Disney California Adventure
🏕️

Camp Perthes

A week of summer camp where kids finally meet others who get it. For a lot of them, it's the first time they've met another kid with Perthes.

A Perthes family together
📚

Trusted education

Plain-language guides on symptoms, treatment, school, and the hard feelings that come with it, all checked by people who know Perthes.

Perthes Kids Foundation at the International Perthes Study Group conference
🔬

Advancing research

We work with the International Perthes Study Group so the doctors studying Perthes hear what families actually go through.

Our impact

What we've done together

$500k+
raised for the cause
19+
years of service
20k+
community reached
100%
dedicated, every day
Our stories

In their words

★★★★★

"Thanks to PKF our son has met lifelong friends who are just like him. I don't know if you'll ever understand what a huge difference you made in both our lives."

L
Lisa
Perthes Mum
★★★★★

"If you have Perthes, don't ever give up on yourself. You can climb any mountain if you've got the guts. Keep up the fight!"

J
John
Adult with Perthes & athlete
★★★★★

"I discovered this wasn't just a connection for my son, but for our whole family. I love our Perthes family!"

S
Sara
Mother & camp volunteer
▶ NOW STREAMING FREE ON YOUTUBE

Rare Kind
the Perthes documentary

A moving short film following children and families through the Perthes journey — an honest, hopeful origin story, down to the bone. Directed by our founder, Perthes survivor and CBS Survivor: Fiji winner Earl Cole, and cut by a two-time Emmy-winning editor.

🏆 Best Documentary 🎬 Best Director 🎗 Best Health Film Academy Herrick Library Archive
Share your Warrior's story: #PerthesStrong #PerthesWarrior #PerthesAwareness #ShowYourRare
💛
A little hope, on repeat
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Every Perthes kid is a superhero

Tap the button and discover your secret hero name.

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Our community

Real kids. Real heroes. Real fun.

Behind every diagnosis is a child who still deserves adventure — and a worldwide family of volunteers, parents, and friends who show up for each other.

Campers and volunteers hugging at Camp Perthes
Friends who just get it
Earl Cole taking a selfie with a group of campers at Camp Perthes USA
Our crew · USA
Two boys sitting close together laughing at the campfire at night
Australian bonds
Three young campers walking arm in arm at Camp Perthes UK
Three amigos · United Kingdom
A camper striking a superhero pose at Camp Perthes Australia
Powers up!
A camper who uses a wheelchair playing a game at camp
Everyone gets to play
Two teen campers resting cheek to cheek, holding handmade memory bears at Camp Perthes
Made with love
Two campers laughing together, one giving a piggyback
Best friends for life

Every photo is a real Perthes kid, family, or volunteer from our community. 💛

The Art Wall

Perthes, in their own words

Sometimes a crayon says it best. Real artwork by Perthes kids — brave, strong, and proud of exactly who they are.

Child's drawing of a caped Perthes Warrior — 'Just a little battling a rare battle. Brave. Strong.'
"Just a little Perthes Warrior — brave & strong"
Child's drawing of a caped Perthes Kids hero standing on the globe — 'Even you are rarer than Perthes!'
"Even you are rarer than Perthes!"
Child's drawing — 'I am confident, I am brave, I am strong, I am a Perthes warrior and I'm proud of it'
"I am brave. I am strong."
Child's painting of kids playing on a playground — 'Believe in yourself'
"Believe in yourself"
Child's drawing of a princess showing her hip bones — 'Perthes Day'
"Perthes Day" — every hip, a crown
🎨

Share your child's art

We'd love to add your Perthes Warrior's masterpiece to the wall. Send it our way and we'll show the world how brave they are.

Send us their art ✉️
Your gift, in action

See exactly what your gift does

100% of funds raised go straight to our mission — camp, travel to specialists, research, education, global advocacy, and community outreach — and every gift is tax-deductible.

$25
Sidekick

Thanks for making an impact — snacks & prizes that make camp fun.

$100
Everyday Hero

You're spreading so much good — camp activities for a Warrior.

$500
Legend

Shine light into the darkness — help send a kid to camp.

The whole child

Perthes isn't only felt in the hip

Months of crutches, sitting out at recess, and feeling different from friends can weigh on a child's heart as much as their body — and on parents, too. Feeling frustrated, left out, or worried is normal, and naming it is the first brave step.

You don't have to carry the heavy days alone. Our community includes counselors and parents who understand, and we're always glad to point you toward gentle, caring support.

💬

Talk about it

Open, honest conversations help kids feel seen and less alone.

🤝

Stay connected

Meeting other Perthes kids reminds them they're in good company.

🌱

Small wins count

Celebrate each step — healing is slow, and that's okay.

🙋

Ask for help

A school counselor or therapist can make a real difference.

Camp Perthes campers and volunteers cheering with hands raised

The first time my son met another kid who limped like him, he lit up. He finally knew he wasn't the only one.

— A Perthes parent

Be the reason a Perthes kid feels like a hero.

Every gift goes straight to the mission — information, camp, connection, and research. Here's what your kindness does:

$35
A care package for a newly diagnosed family
$100
Helps a warrior get to Camp Perthes
$500
Fuels research into why Perthes happens

Monthly gifts are the steady heartbeat that keeps camp, support, and research going all year.

Perthes Info

Perthes, explained simply

Written for parents and kids, not just doctors. We keep it clear and honest, and we check it against trusted medical sources so you can trust what you read here.

What is Legg-Calvé-Perthes disease?

Your hip is a ball-and-socket joint. In Perthes, the ball at the top of the thigh bone temporarily loses its blood supply. When bone doesn't get blood, the cells inside it die off (doctors call this "avascular necrosis"), and the ball softens and can lose its round shape for a while.

Here's the hopeful part: the blood supply comes back on its own, and the body slowly rebuilds the bone over the next year or two. The whole goal of treatment is to keep that ball as round as possible while it heals, so the hip keeps moving well. Most kids recover and get back to being kids.

"Perthes can't stop me — I can still fly." — a Perthes Kid

What you might notice

A noticeable limp, often without obvious injury
Pain in the hip, groin, thigh, or knee
Pain that worsens with activity, eases with rest
Stiffness and reduced range of hip motion
Muscle thinning in the thigh or buttock

Always consult a pediatric orthopaedic specialist for diagnosis. This page is educational and not a substitute for medical advice.

Pelvic X-ray showing Legg-Calvé-Perthes disease, with the affected left hip circled in red
The circled hip shows the flattened, fragmented "ball." The other hip is healthy and round.
What an X-ray shows

Seeing Perthes on film

An X-ray is usually the first test. Doctors compare both hips side by side: a healthy femoral head is round and smooth, while a Perthes hip can look flatter, denser, or fragmented as the bone loses and then rebuilds its blood supply.

Seeing your child's X-ray for the first time can feel scary — but these changes are part of a healing cycle, and the shape often improves as the bone regrows.

Example image for education. Every child's X-ray and stage is different — your care team will explain yours.

A dad and his son at a Perthes event
You are not alone

Thousands of families have walked this road — and their kids grow up to thrive.

How Perthes changes the hip

The hip is a ball-and-socket joint. In Perthes, the "ball" at the top of the thigh bone loses its blood supply, softens, and can flatten while it heals.

Healthy hip

The round femoral head sits snugly in the socket, with a healthy blood supply (shown in coral).

Perthes hip

The ball loses its blood supply, softens, and flattens — so it no longer fits as roundly in the socket.

Simplified diagram for clarity. Real diagnosis is made with X-rays and sometimes MRI — see below.

A little history

Why three names?

In 1910 — just as the new X-ray was changing medicine — three surgeons on two continents described the same hip condition, all within months of each other. Hover a name to meet them.

L

Arthur Legg

🇺🇸 UNITED STATES · 1910

A Boston surgeon who described an "obscure affection of the hip joint" in children after a limp with no injury.

C

Jacques Calvé

🇫🇷 FRANCE · 1910

A French surgeon who used the new X-ray to show the flattening of the ball of the hip that marks the condition.

P

Georg Perthes

🇩🇪 GERMANY · 1910

A German surgeon whose work gave the condition its most-used short name today — simply "Perthes."

Because all three described it at nearly the same time, the full medical name became Legg-Calvé-Perthes disease — over a century later, families around the world simply call it Perthes.

Healthy hip with blood flowing to the femoral head Perthes hip with the blood supply cut off to the femoral head
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Why it happens

It all comes down to blood supply

Bone is living tissue that needs a steady blood supply. In Perthes, the tiny vessels feeding the ball of the hip are briefly cut off — so the bone weakens before the body can heal it. Toggle the diagram to see the difference.

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Perthes kids being kids together
Perthes is part of their story — not the whole story.
Three Camp Perthes kids seen from behind heading to a cabin — one using a wheelchair, one on forearm crutches, and one wearing a hand-drawn superhero cape
Every kid walks their own path — and never alone.
The basics

Perthes at a glance

The big picture in six numbers. Every child is different — your doctor's guidance always comes first.

4–10
Typical age of onset

Most often between 4 and 10 years old (average around 7), though it can appear younger or older.

4:1
More common in boys

Boys are affected about four times as often as girls — though girls can have it too.

~1 in 10k
A rare condition

Roughly 1 in every 10,000 children — which is why so few doctors see it often.

1 hip
Usually just one side

Perthes affects one hip in most children; both hips are involved in only about 10–20% of cases.

2–4 yrs
To heal, stage by stage

The hip moves through four stages over roughly 2–4 years, sometimes longer. It's a marathon.

~80%
Do well without surgery

Perthes is not life-threatening. About 4 in 5 children under 6 when it starts recover well with careful, non-surgical care.

Interactive

The four stages of Perthes

Tap through each stage to see what happens to the hip. Perthes runs its course over roughly 2–4 years, sometimes longer.

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What happens next

There isn't one path through Perthes. Your doctor will choose based on your child's age and how much of the hip is affected. Most plans use some mix of these.

Watch & support

Regular check-ups and X-rays, rest when it hurts, and easing off high-impact play. Many young kids need little more than this.

Keep it moving

Physical therapy and gentle motion (like swimming) help the hip stay flexible while it heals.

🛡️

Keep it round

Doctors call this "containment" — keeping the ball snug in the socket so it heals round. Sometimes a brace, cast, or surgery helps with this.

🕒

Time to heal

Perthes is a marathon, not a sprint. Healing often takes 2–4 years, sometimes longer, and follow-up X-rays track how the ball is rebuilding.

A vintage black-and-white photo of a girl in a Petrie (A-frame) plaster cast that holds both legs wide apart, standing with a crutch beside a smiling nurse
Containment, then & now

The Petrie cast — a piece of Perthes history

To keep the hip “contained” while it heals, doctors once relied on Petrie casts — also called broomstick or A-frame plasters — that hold both legs wide apart in a frog-like position, often joined by a bar. Kids learned to scoot, swing, and even walk on crutches in them.

Today most children need far less — often watchful waiting or bracing — and casts are used more selectively. However your child’s Perthes is treated, they join a long, brave line of Perthes kids.

Kid energy, no outlet?

What your child can still do

Non-weight-bearing, crutches, or a cast can't slow down a curious kid. Here are low-impact ways to burn that energy, learn something new, and keep the boredom away while the hip heals.

🩺

Always check with your child's doctor first — what's safe depends on their stage and weight-bearing rules. When in doubt, ask before you try it.

🎨

Create & build

Arts & crafts Drawing & painting LEGO & models Puzzles Baking at the counter Poetry & stories
🎵

Learn something new

Play an instrument Coding A new language Astronomy & a telescope Acting class Documentaries
🎮

Games & play (seated)

Video games (with limits) Board & card games Chess Billiards Ping pong Percy's Arcade
🏊

Gentle movement

Only if your doctor says it's OK

Swimming & water play Bike riding (if cleared) Archery Kite & drone flying Gardening
🐾

Get out & explore

Zoo, farm & aquarium Animal therapy & pets Movies & the library Museums Cheer on siblings' games
🍎

Feed the healing, too

Whole foods, fruits & veggies support bone remodeling. Some families find anti-inflammatory choices (like turmeric) and good hydration help — always run supplements and pain relief past your doctor first.

…and much, much more. The goal is simple: keep it low-impact, keep it fun, and keep your kid feeling like a kid. 💛

The pictures behind the diagnosis

X-rays and MRIs guide the whole journey — confirming Perthes, tracking how the hip heals, and planning any surgery. You'll see a lot of them, and that's normal.

X-ray

The main tool. Shows the shape of the femoral head and the stage of the disease.

MRI

Catches Perthes early and shows detail that X-rays can miss, before big changes appear.

Surgery & follow-up

If needed, an osteotomy keeps the head contained. Follow-up scans track healing for years.

Illustrations shown for clarity. Perthes Kids Foundation can add real, consented patient X-rays and MRIs here — send us your images and we'll place them.

Questions parents actually ask

The honest ones, answered honestly.

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A blue-and-zebra-striped awareness ribbon with a tiny crutch painted on a camper's arm, with the words 'Perthes warrior' below in blue face paint
Face paint "tattoos" at Camp Perthes.
Perthes Warriors

Every Perthes kid is a warrior

Casts, crutches, and the long wait are hard — and the kids who carry them are some of the bravest, most stubborn heroes around. The zebra-striped ribbon is our rare disease awareness symbol; the crutch is worn like a badge of honor. Your child isn't defined by Perthes — they're a warrior walking through it.

Quality care

Where to find good care

Perthes is rare, so not every orthopaedist treats it often. These are reliable routes to accurate information and experienced care — wherever you live.

A pediatric orthopaedist experienced in Perthes

Ask directly how many Perthes cases they've managed. The International Perthes Study Group surgeon finder lists specialists worldwide.

Leading pediatric hip centers

Centers like Scottish Rite for Children (Dallas, an IPSG research hub), Boston Children's, and Shriners Children's have deep Perthes experience — Shriners treats children regardless of the family's ability to pay.

Second opinions & telemedicine

Keep copies of every X-ray and report. A second opinion is normal and encouraged — many centers will review imaging remotely.

Ask us — we'll help you navigate

We can't diagnose, but we can help you know what to ask, prepare for appointments, and connect with families near you. If the info you need is not on our website, contact us at info@pertheskids.org.

Bring this to your appointment

Questions to ask your child's doctor

It's easy to freeze up in the room. Screenshot this list or jot it down before you go.

What stage is my child's Perthes in right now?
How much of the hip's "ball" is affected?
Given my child's age, what treatment do you recommend, and why?
What should we limit, and what's safe to keep doing?
How often will we check progress, and should we see a Perthes specialist?
Perthes campers thrilled and giving thumbs up on a roller coaster
Braver than they know

Perthes doesn't stop a kid from being a hero.

Resources for your journey

For parents

A diagnosis can be scarier for parents than kids. Get familiar with what to expect and connect with families who understand.

For kids

Casts, crutches, and braces are tough. But Perthes Warriors are some of the bravest, most stubborn kids around, and you're one of them. Come meet others who get it.

Camp Perthes →

For adults with Perthes

Every adult with Perthes was once a Perthes kid. Share your story, give back, and help science understand the long journey.

Treatments by age →

The Parents' Guide to Perthes

Recommended reading for families new to Perthes — by Betsy Miller & Dr. Charles T. Price (Thinking Ink Press). Plain-language explanations of diagnosis, stages, treatment, and healing.

Get the book →
Downloads & Forms

Take these with you

Print them for the fridge, bring them to appointments, or share them with your child's school. Everything here is kept current.

Perthes Kids Foundation is a 501(c)(3) nonprofit (EIN 47-3841121). All donations are tax-deductible. Annual financials are available on request. Educational materials are not a substitute for professional medical advice.

🧭 NEWLY DIAGNOSED? START HERE

First, take a breath.
Your child is going to be okay.

A Perthes diagnosis is scary and disorienting — especially in the first few days. This is your calm, step-by-step guide: what to do this week, what to expect over the months ahead, and exactly what to ask your doctor. One step at a time.

Most

children heal well and return to a full, active life.

Not

your fault. Nothing you did or didn't do caused this.

Never

alone — thousands of Perthes families walk this with you.

Your roadmap

What to do, one step at a time

This week
Get grounded.
  • Let yourself feel it, then breathe. This is a marathon, not a sprint — you have time to make good decisions.
  • Confirm your child is under a pediatric orthopaedic specialist (not only a general pediatrician).
  • Write down your questions as they pop up. Use our printable list below so nothing gets forgotten.
  • Tell school and coaches the basics, and ask about a rest spot and reduced high-impact play for now.
This month
Build your plan.
  • Understand your child's stage and treatment plan — watchful waiting, bracing/casting, physio, or surgery.
  • Start the symptom & limp tracker below. Patterns over weeks help your doctor far more than any single day.
  • Set up school support (in the U.S., a 504 plan) and download our note for teachers & classmates.
  • Find your people — connect with families near you on the Locator, and consider a second opinion if anything feels unclear.
The long game
Heal & thrive.
  • Expect healing to take 2–4 years, sometimes longer. Think in months, celebrate small wins, and keep every follow-up X-ray.
  • Protect your child's heart, not just their hip — watch for frustration or sadness, and keep play joyful within their limits.
  • Sign up for Camp Perthes, where your child meets others who truly get it.
  • When you're ready, give back: share your story, or add your voice to research so the next family has it easier.
Doctor-visit toolkit

Two printables to take with you

Walk into every appointment prepared. Print these, fill them in, and bring them along.

📋

Questions to ask your doctor

A ready-made checklist of the 12 questions parents most wish they'd asked — with space to write the answers.

📈

Symptom & limp tracker

A simple daily log for pain, limp, and notes. Trends over weeks tell your care team the real story.

Plain-language decoder

The words your doctor will use

No medical degree required. Tap any term for a clear, human explanation.

{{ g.d }}

You've got this — and you've got us.

Keep going at your own pace. Whenever you have a question, Percy and this whole community are here.

Find families near you →
Research & Science

Advancing the science of Perthes

We translate the latest global research into plain language — and bring patient and family voices directly into the world's leading studies. This is your trusted, current window into Perthes science.

Updated for 2026 · reviewed against peer-reviewed sources
Perthes Kids Foundation at the International Perthes Study Group
Bringing family voices to the world's top Perthes researchers.
In partnership with

The International Perthes Study Group

The IPSG unites pediatric orthopaedic specialists and researchers worldwide with one goal: to advance the knowledge and care of children with Perthes. As a patient partner, Perthes Kids Foundation is invited each year to present the family perspective alongside some of the world's top hip surgeons.

Behind every X-ray and MRI is a child and a family — and that voice is central to research that will one day find the cause and a cure.

1,182
adults took part in a landmark study of adult Perthes outcomes
3
active age-based treatment studies (6–8, 8–11, 11+)
2032
the multicenter cohort study runs through
Members of the International Perthes Study Group and Perthes Kids Foundation gathered together at an annual meeting
Surgeons, researchers & family advocates — one global team for Perthes kids.
Perthes Kids Foundation at the International Perthes Study Group annual meeting.
In plain language

What the research is telling us

The science is complex — here's what it means for your family, without the jargon.

Age matters most

Younger children generally have more time to rebuild a round hip, so age at diagnosis is one of the strongest signals for outcome — and it guides which treatment fits.

🏃🏽‍♂️

Movement helps healing

Keeping the hip mobile — through physiotherapy and the right activity — is linked to better long-term shape and function. Staying gently active is part of the treatment.

🔭

The adult picture matters

A landmark study of over a thousand adults who had Perthes as children helped researchers understand life decades later — pain, activity, and arthritis risk — so today's kids get better long-term guidance.

Are you a clinician or researcher?

We connect the family and patient community with the world's leading Perthes science. If you're studying Perthes or want to collaborate, we'd love to hear from you.

Collaborate with us →
A young Perthes warrior smiling, with a hand-painted awareness ribbon on her arm
Why the science matters

Behind every X-ray is a child — and a whole family.

Every study, statistic, and survey on this page exists for one reason: to give kids like this a rounder hip, a fuller life, and a future without Perthes.

The science, simply

What actually happens inside the hip

At its core, Perthes is a blood-supply problem. Understanding the biology is how researchers move toward the cause — and one day, a cure.

Watch a hip heal
{{ healLabel }}
Hip socket Femoral head (the ball)
HealthyNecrosisFragmentHealed

{{ healCap }}

1

Supply is cut off

For reasons still being studied, blood stops reaching the ball of the hip, and the bone begins to weaken.

2

The bone softens

Without blood, cells die and the femoral head can flatten and lose its round shape.

3

Blood returns & rebuilds

New bone grows back over months to years. Research focuses on helping it heal as round as possible.

Open questions

What the science is chasing

The cause

After 100+ years, why Perthes starts is still unknown. Finding it is the field's biggest question.

Blood & healing

How to restore blood flow and speed healing — including bench studies of new bone growth.

Genetics

Gene variants and non-coding RNAs may explain why some children are affected — a path to personalized care.

Best care by age

Which treatment works best at which age — the question at the heart of the IPSG's global studies.

By the numbers

Age when Perthes begins

From an international study of 1,182 adults who had Perthes as children.

Under 6 years43%
6 to 7 years27%
8 to 11 years22%
Over 11 years6%
Global study

One question, three age groups

The IPSG's multicenter cohort compares real-world treatments by age at onset — running through 2032.

6–8
Younger children — comparing bracing & surgical options
8–11
The hardest age to treat — where evidence matters most
11+
Older kids & teens — newer joint-preserving techniques

Children under 6 usually do well without surgery, so the studies focus on ages 6 and up.

Latest findings

Fresh from the literature

Curated peer-reviewed research · 2025–2026
🇬🇧 UK
216+
children
enrolling
FEATURED TRIAL2025 · Definitive RCT

Op NON-STOP: surgery vs. non-surgical treatment of Perthes

The UK's landmark randomized, multicentre trial — recruiting children aged 5–12 in the early stages of Perthes — is set to finally answer whether early surgical containment beats active non-surgical care. A top research priority of the British Society for Children's Orthopaedic Surgery and the James Lind Alliance.

Bone & Joint Journal (2025) · ISRCTN 83315571Read the protocol ↗
TREATMENT2026 · RCT

Kinesiotaping in Perthes: a randomized, placebo-controlled trial

A double-blind trial examines whether kinesiotaping can support pain and function in children with Perthes — part of a growing focus on non-surgical, quality-of-life care.

Physical & Occupational Therapy in Pediatrics (2026)

BIOLOGY2025 · Review

Understanding Perthes at the molecular & cellular level

A major review maps the molecular biology behind the disease — from vascular changes to gene variants — as the search for its true cause continues.

Frontiers in Physiology (2025)

SURGERY2025 · Meta-analysis

Efficacy of hip distraction (arthrodiastasis)

A systematic review and meta-analysis weighs hip distraction — a promising newer modality — as a joint-preserving option, especially for older children.

J. Musculoskeletal Surgery & Research (2025)

GENETICS2025 · Systematic review

The role of non-coding RNAs in Perthes

Researchers review how non-coding RNAs may shape the disease's development, diagnosis, and future therapy — a frontier in personalized care.

Medical Science Monitor (2025)

Peer-reviewed

Published research

Our work isn't just anecdotal — our founder co-authored peer-reviewed science with one of the world's leading Perthes researchers.

Bone & Joint Open · 2022 · Open Access

What is the adult experience of Perthes' disease? Initial findings from an international web-based survey

McGuire MF, Vakulenko-Lagun B, Millis MB, Almakias R, Cole EP, Kim HKW.

Bone Jt Open. 2022 May;3(5):404–414 · doi:10.1302/2633-1462.35.BJO-2021-0185.R1 · PMID: 35535518

Co-authored by PKF founder Earl Cole and Dr. Harry K. W. Kim (Director, Center for Excellence in Hip; International Perthes Study Group), this landmark study of 1,182 adults is one of the largest ever conducted on the lifelong experience of Perthes disease.

Why you can trust this page

Our evidence standards

📚

Sourced from the best

Our information reflects current peer-reviewed literature and guidance from the International Perthes Study Group, AAOS OrthoInfo, and leading pediatric hip centers.

🩺

Guided by clinicians

Our content is shaped by our Medical Board of pediatric orthopaedic surgeons — several of them members of the IPSG.

🔄

Kept current

We track new studies as they publish and refresh our summaries — because the science keeps moving, and so do we.

This page is educational and not a substitute for professional medical advice. Always consult a qualified pediatric orthopaedic specialist about your child's care.

Trusted sources & further reading

We point families only to credible, authoritative resources. Explore the science yourself:

Educational summaries only, not medical advice. Always discuss treatment options with a pediatric orthopaedic specialist. Research links are provided for reference and are not endorsements of any specific study or trial.

Camps & Programs

Where Perthes kids just get to be kids

Since 2013, Camp Perthes International has run week-long summer camps in the USA, UK, and Australia — a fun, safe place for kids and families to meet, support each other, and make lifelong friends.

The whole Camp Perthes Australia group — kids, teens and volunteers together
Around the world

Our camp chapters

Camp Perthes runs on three continents, each led by local volunteers who know the journey firsthand.

🇺🇸

Camp Perthes USA & Canada

Our flagship camp since 2013, held each summer in Minnesota. Open to campers across North America, with Perthes Kids Fly Free helping families reach it. 501(c)(3) · EIN 47-3841121.

Learn more →
🇬🇧

Camp Perthes United Kingdom

A week-long summer camp for children and families across the UK, run by local volunteers. Registered Charity No. 1188505.

Learn more →
🇦🇺

Camp Perthes Australia & New Zealand

Bringing camp to families across Australia and New Zealand, led by Perthes Kids Foundation Australia & New Zealand Ltd — a registered ACNC charity.

Learn more →
🌎

Camp Perthes South America

We're building toward the first Camp Perthes in South America, supported by our Latin America office. Coming soon.

En Español →
🏕️

Camp Perthes International

Week-long camps in the USA, UK, and Australia, running strong since 2013. Adaptive activities, new friendships, and a whole lot of fun for kids and their families alike — with South America coming soon.

✈️

Perthes Kids Fly Free

In partnership with Miracle Flights, we help provide free flights for kids with Perthes to attend Camp Perthes USA and reach Perthes specialists. Returning in 2027!

🌟

Global Ambassadors

Passionate volunteers who grow the Perthes community and raise awareness in their part of the world. Yes — there are perks!

Perthes Warriors showing their surgery scars with pride at camp

Where scars become superpowers

At camp, kids who spent all year hiding their scars finally show them off — because everyone here has one too. That's the magic of Camp Perthes: for one week, Perthes isn't the thing that makes you different. It's the thing you all have in common.

A week they never forget

Camp, in full color

Zip lines and archery, capes and crutches, brand-new friends and belly laughs — this is what Perthes kids get to just be kids.

A camper hugging the Camp Perthes mascot bear Campers and a volunteer laughing during a bucket water fight at Camp Perthes Campers roasting marshmallows over a crackling campfire at Camp Perthes A camper floating in an inner tube in the pool Campers petting a friendly therapy dog Campers canoeing together on the lake A camper in a wheelchair taking aim with a slingshot at camp Campers giving thumbs up in climbing helmets at the ropes course Campers posing with Wizard of Oz characters on a day out Campers hanging out around the campfire at night New friends arm in arm at camp
Every kid's a hero here
★ See you at Camp Perthes ★
Press play

Camp in motion

See the smiles for yourself — watch Camp Perthes come to life on our YouTube channel.

Camp Perthes kids in superhero masks and capes, arms raised
Watch: this is Camp Perthes
A camper climbing a tree at camp
Adventure & play
Campers playing field games together
Game on!
Campers together at golden hour
Golden hour together
🚀
👾 👾 🕹️
🏀
🛸
🎮 New · Play & learn

Percy's Perthes Arcade

Catch nutrients to heal the hip, and avoid things that damage the hip. Test your Perthes & PKF trivia, and get your name on the leaderboard — Survivor Challenge style.

Play the arcade →
Camp Perthes USA

The essentials

3 camps every summer
🏵️
Five days, four nights
A full week of summer adventure
📍
Orange, CA
Irvine Ranch OEC · 30 min from LAX
🎒
All-inclusive
Lodging, meals, activities, field trip, shirt & gift bag
🧒
For Perthes kids
Children diagnosed with Perthes

Camp Perthes has run every summer since 2013. Today we host three camps each summer — first in the USA, then the UK, then Australia — so families across the world have a camp to call their own. Camp is open to children diagnosed with Legg-Calvé-Perthes; teens ages 16–18 who've attended twice can apply as Counselors-in-Training.

What we stand for

Our camp philosophy

🛡️

Safety first, then fun

Every volunteer is 100% dedicated to camper safety before anything else. Medical needs, allergies, and mobility are planned for so every child can join in.

🤝

Every child, equally

Camp isn't about any one camper — volunteers give their time equally to all the kids, so no one feels left out and every child has their best possible week.

💛

Led by those who get it

Our volunteers are adults who had Perthes and parents of Perthes kids — mentors who've walked the same road and show campers what's possible.

Coming soon

Even more ways to help

A Perthes Financial Assistance Program, Perthes In Action Network, International Volunteer Program, and much more.

🏕️ Campers & 🦸 Volunteers Be first to know when camp opens Whether your child wants to attend or you'd like to volunteer — leave your details and we'll reach out. Sign Up ▾

Applications aren't open yet. Leave your details — whether you'd like your child to attend, to volunteer, or to help another way — and we'll reach out the moment the camp nearest you opens.

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Our impact

Every number here has a name

Behind every figure is a child who felt less alone, a parent who found answers, a doctor with better resources. Here's what this worldwide family has built together — and exactly where your support goes.

20k+
strong community

Parents, kids, adults with Perthes, and clinicians connected worldwide.

60+
countries reached

From North America to Latin America, the UK, Australia & beyond.

19+
years of service

Founded in 2007 by a Perthes survivor — and growing ever since.

3
Camp Perthes countries

USA (2013), Australia (2016), and the UK (2018) — with more on the way.

$500k+
raised for families

Directed to camps, equipment, resources, and research.

100%
to our mission

Every dollar goes to Perthes programs, families, and awareness.

Figures reflect our global community to date. Final audited figures are available on request.

Proof, not promises

What camp has meant, in numbers

1,200+
kids sent to camp
3
countries with camp
12+
years of Camp Perthes
5,000+
family members supported (est.)

Estimated across every camper we've sent since 2013, together with their parents and siblings and the volunteers who make camp possible — the wider family reached by our advocacy since 2007.

This is who it's for

Every gift ends up right here — turning Perthes kids into the heroes they already are.

Where your support goes

Where every gift goes

🏕️

Camp & experiences

A week where Perthes kids meet others just like them — plus the field-trip day, supplies, and activities that make it unforgettable.

✈️

Travel to specialists & camp

Helping families reach the right Perthes doctors and get to camp — support toward flights, hotels, and travel so distance and cost never decide a child's care or their week at camp.

🔬

Research & scholarships

Funding the International Perthes Study Group and the world's largest patient survey — and building toward scholarships for Perthes kids.

📚

Education & resources

Doctor-reviewed guides, printable downloads, and a bilingual live assistant so no family faces a diagnosis without clear answers.

📣

Global advocacy & awareness

As a NORD member and Rare Disease Day partner, raising awareness worldwide so Perthes is understood by schools, employers, and the public.

💛

Community & outreach

The global Family Locator, PKF merchandise, and the social-impact and promotional work that keeps this worldwide community connected and growing.

Donate

Give a Perthes kid their year back

100% of funds raised go straight to our mission — camp and experiences, travel to specialists, research and future scholarships, education and resources, global advocacy and awareness, and the outreach that keeps this community connected. All donations are tax-deductible — thank you for your support!

$25Sidekick

Thanks for making an impact!

$50Hero-in-Training

Two words: endless gratitude.

Most Popular
$100Everyday Hero

You're spreading so much good! Donate ↓

$250Super Hero

Has anyone told you how amazing you are lately?

$500Legend

Your support helps shine light into the darkness.

$1,000Galactic Hero

You're a true change-maker.

🎢 Sponsor our field trip day

$2,500 helps pay for our field trip day

It helps pay for amusement-park tickets, transportation, lunch, snacks, and wheelchair rentals for an unforgettable day out — we've taken the kids to places like SeaWorld, Six Flags, and Disneyland. Sponsor it in your name, your company's, or in someone's memory.

Sponsor the field trip day →
🔁

Monthly giving

Become a monthly hero — steady support that lets us plan ahead for every camp.

🏢

Employer match

Many employers double your gift. Ask your HR team about matching — it's easy.

💛

Legacy giving

Leave a lasting gift for future Perthes kids. Ask us about including PKF in your will.

A year of showing up

Milestones from our global community, on and off the field.

Camp, three countries

Camp Perthes ran across the USA, Australia, and the UK — belly laughs, zip lines, and lifelong friendships.

Families found each other

Our Family Locator kept connecting parents, adults with Perthes, and specialists across 60+ countries.

Answers, day or night

We welcomed newly-diagnosed families with a bilingual site and Percy, our always-on guide to trusted Perthes info.

Trust & transparency

Accountable to every family

We're a volunteer-driven 501(c)(3) nonprofit and a proud member of NORD. We believe the families we serve deserve to see exactly how their trust is used.

501(c)(3) · Tax ID 47-3841121 NORD member Rare Disease Day partner

See the details

Our financial statements are available to any family, donor, or partner who asks.

Our UK and Australia/NZ chapters are separately registered charities that file in their own countries:
Camp Perthes UK — Charity No. 1188505 ↗
PKF Australia & New Zealand — ACNC register ↗

For companies & foundations

Corporate partnerships

Rare disease receives a fraction of the funding that better-known conditions do — so a corporate gift to PKF goes further, reaches an underserved global community, and gives your company a cause few others have claimed. Turn CSR budget into camp days, family support, and research across 60+ countries.

$10,000
Community Partner
  • Logo on our website & annual report
  • Social media recognition
  • A personalized impact report
Most impact
$25,000
Camp Sponsor
  • Everything in Community Partner
  • Sponsor a full camp session
  • Your logo at camp & on camp shirts
  • An employee volunteer day
$50,000+
Presenting Partner
  • Everything in Camp Sponsor
  • Presenting sponsor of Camp Perthes
  • Co-branded awareness campaign
  • Executive impact briefing
Become a partner ✉️
Custom partnerships, foundation grants, and in-kind support are welcome — let's build something together.
Recognized & trusted
501(c)(3) · EIN 47-3841121 NORD member Rare Disease Day partner IPSG partner

Be the first name here — we're inviting founding corporate partners to help lead the way for Perthes families worldwide.

See your impact

What your gift does

Slide to any amount and see the difference it makes for a Perthes kid. Every gift, big or small, becomes something real.

${{ giftAmt }} one-time gift
Drag the slider to explore
$25$1,500
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Give ${{ giftAmt }} ♥

Turn a number into a name

Your gift becomes a camp scholarship, a resource for a scared parent, a step toward a cure. Join the family.

Donate now ♥
The whole Camp Perthes Australia group in red shirts posing together in front of the Movie World Hollywood sign Camp Perthes kids on a high ropes course in helmets and harnesses, cheering each other on Two boys in green Camp Perthes USA shirts with arms around each other, grinning at an amusement park A group of Camp Perthes girls in a tight circle with arms wrapped around each other's shoulders, seen from above A smiling boy in a yellow wheelchair outdoors on a bright blue-sky day at camp

Thousands of kids. One community that shows up. Every gift keeps these days coming — the friendships, the firsts, the feeling of not being the only one.

About Us

Founded by a Perthes kid

Perthes Kids Foundation is a 501(c)(3) global nonprofit — the world's leading patient support charity dedicated entirely to Legg-Calvé-Perthes disease. We're a proud member of NORD, the National Organization for Rare Disorders, standing with the rare-disease community on Rare Disease Day and all year long.

Founder Earl Cole at the very first Camp Perthes, on the dock in Florida Survivor Camp Perthes logo

Our story

Perthes Kids Foundation began in 2007, founded by CBS Survivor: Fiji winner Earl Cole — who was diagnosed with Legg-Calvé-Perthes disease as a child. Having endured wheelchairs, casts, and leg braces, Earl set out to give back to families around the world facing the same journey, using part of his Survivor prize money to found and fund the foundation. He has also served as the California State Ambassador for the National Organization for Rare Disorders (NORD), advocating for the wider rare-disease community.

In 2015, PKF became an independent nonprofit dedicated solely to Perthes. Today, with a community 20,000+ strong, we are the leading organization connecting parents, kids, doctors, and adults with Perthes across the globe — to advocate, educate, and support one another.

Four smiling Camp Perthes friends together on a sunny amusement-park field-trip day, roller coaster behind them, one using forearm crutches
Field-trip day at the amusement park — the kind of joy that started it all.
A group of Perthes Kids Foundation children in maroon PKF jerseys on a stadium athletics track on a bright sunny day out at a football club
A match-day out with our UK chapter — friendships that reach across the world.
Three campers in matching shirts wade into the ocean waves hand in hand
Facing the big waves together.
A boy in a bucket hat laughing with pure delight during a camp water game
Pure, uncomplicated fun.
A grinning boy at camp proudly holding a giant tub of Utz cheese balls
Cheese balls — an official camp food group.
Our journey

From one kid's story to a global family

Tap a moment to walk through how it all grew.

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Our commitment

A wide-encompassing approach to combating the disease.

❤️

Health

The mental, physical, and emotional health of every child comes first.

🧭

Leadership

Led by those who've lived it, with medical and corporate expertise on our board.

📖

Education

Staying current with the latest studies so we can share what matters most.

Action

Real-world action — camps, support, and funding research toward a cure.

A worldwide family

Four chapters and a growing global reach — one Perthes family, all with the same superhero.

Perthes Kids Foundation USA
United States & Canada (HQ)
Los Angeles, California
Follow on Facebook →
Perthes Kids Foundation Australia & New Zealand
Australia & New Zealand
Sydney, NSW
Follow on Facebook →
Perthes Kids Foundation UK
United Kingdom
Staffordshire, England
Follow on Facebook →
Fundación Niños con Perthes — Latin America
Latin America
Bogotá, Colombia
Follow on Facebook →
Growing communities 🇯🇵 Japan 🇿🇦 South Africa 🇮🇹 Italy — where our work is reaching more Perthes families every year.
One family, everywhere

Different countries, different accents — same journey.

From a first, scary diagnosis to a week of belly laughs at camp, this is the family you're joining. No one walks the Perthes road alone here.

A group of Camp Perthes campers and counselors, boys and girls, smiling together at camp
Governance & expertise

Leadership & Medical Board

Our work is guided by leading pediatric hip surgeons — several of them members of the International Perthes Study Group (IPSG) — alongside clinicians, counselors, and advocates. This is the medical credibility behind everything you read here.

Board of Directors
Earl Cole

Earl Cole

FOUNDER & CHAIRMAN

Former Perthes patient and Executive Director of Camp Perthes International.

Dr. Rachel Goldstein

Rachel Goldstein, MD, MPH

IPSG · CHLA

Director, Hip Preservation Program, Children's Hospital Los Angeles.

Dr. Shelley Cole

Shelley Cole, PharmD

EVP · CLINICAL PHARMACIST

Leads camp medication safety and parent counseling on pain management.

Dr. Salil Upasani

Salil Upasani, MD

IPSG · RADY CHILDREN'S

Co-Director, Int'l Center for Pediatric & Adolescent Hip Disorders, San Diego.

Robert Mason

Robert Mason, Esq.

LEGAL & COMPLIANCE

SVP, Business & Legal Affairs — oversees contracts and medical compliance.

Dr. John E. Tis

John E. Tis, MD

IPSG · JOHNS HOPKINS

Pediatric orthopedic surgeon, Johns Hopkins University School of Medicine.

🔬

Backed by science

Multiple board members belong to the International Perthes Study Group — the world's leading Perthes research collaborative.

Advisory Board
Dr. Jack Kuo

Jack Kuo, MD

PSYCHIATRY

Director of Psychiatry — supporting the emotional side of the Perthes journey.

Lori Kennedy

Lori Kennedy, MS, LPC

COUNSELOR · PERTHES PARENT

Licensed counselor, play therapist, and Camp Perthes volunteer since 2014.

Reginald Wright

Reginald Wright

OPERATIONS & FINANCE

Nonprofit operations and government-grade budget and compliance expertise.

Sara Clark

Sara Clark

OPERATIONS MANAGER · PERTHES PARENT

Educator, global ambassador, and Camp Perthes volunteer since 2014.

International Boards
Claudia Giffuni

Claudia Giffuni

🌎 PERTHES EN ESPAÑOL

Leading Niños Con Perthes and our Spanish-speaking community across Latin America.

Julia Woods

Julia Woods

🇦🇺 AUSTRALIA & NZ BOARD

Guiding Camp Perthes and family support across Australia and New Zealand.

Nerylee Johnson

Nerylee Johnson

🇦🇺 AUSTRALIA & NZ BOARD

Supporting Perthes families and camp organisation Down Under.

Todd Langthorne

Todd Langthorne

🇦🇺 AUSTRALIA & NZ BOARD

Supporting Camp Perthes and Perthes families across Australia and New Zealand.

Megan Ward

Megan Ward

🇬🇧 UNITED KINGDOM BOARD

Helping lead Camp Perthes UK and our British Perthes community.

Elaine Kerr

Elaine Kerr

🇬🇧 UNITED KINGDOM BOARD

Registered nurse supporting UK families and the annual Camp Perthes UK programme.

Alexander Aarvold, MD

Alexander Aarvold, MD

🇬🇧 UNITED KINGDOM BOARD

Paediatric orthopaedic surgeon supporting Camp Perthes UK and our British community.

Camp Perthes volunteers and kids together holding a colorful parachute during a group game
Get Involved

Be someone's hero

There are so many ways to improve the lives of children and families living with Perthes — and every one of them matters. Some of our most beloved volunteers are adults who had Perthes themselves.

Donate

Make a real difference — even help send a kid to camp. All gifts are tax-deductible.

Volunteer

Join a camp, become a Global Ambassador, or lend your skills. Especially meaningful for adults who had Perthes.

🌐

Connect

Join our social communities and follow current Perthes research to stay connected and help move it forward.

The Perthes community together at camp
It takes all of us — this is who you're helping.
Volunteer

Give your time, change a kid's year

Whether you can give a week at camp or an hour from your couch, there's a role for you. Volunteering means the most to the kids when it comes from adults who had Perthes themselves.

🏕️

Camp Perthes crew

Spend a week as a cabin leader, activity helper, or medical volunteer. Training provided — heart required.

Join the camp crew →
🎒

Counselor-in-Training

Teens 16–18 who've attended two or more camps can grow into leaders through our CIT program — the first step toward joining the camp crew.

Grow into a CIT →
🌟

Global Ambassador

Raise awareness and connect families in your city or country. Flexible, remote-friendly, and yes — there are perks.

See the program →
🛠️

Skills & pro bono

Designers, writers, health pros, translators, event planners — lend the skills you already have, on your schedule.

Offer your skills →
🌟 About the Global Ambassador Program →
A higher-profile role

The Global Ambassador Program

Our Global Ambassadors increase awareness of Legg-Calvé-Perthes Disease and Perthes Kids Foundation through personal advocacy. It's how we reach families far from any camp — someone becoming the Perthes community in their own city, region, or country. This role is reserved for experienced volunteers, community leaders, influencers, and genuinely passionate advocates.

As an Ambassador, you

  • Represent PKF in your community and beyond
  • Raise awareness and connect local families
  • Spark and support fundraising opportunities
  • Promote our programs, events, and advocacy
  • Keep the PKF director looped in on your work

What PKF provides

  • Access to our global social media channels
  • Some financial support for your efforts
  • Expert guidance for awareness & fundraising
  • Early access to PKF news and opportunities
  • Chances to host events & volunteer at camps

Because ambassadors represent the foundation publicly, this is a vetted role: applicants provide two personal references (not family) and complete a background/safeguarding check. We're looking for people who really want it.

Ready to put your name forward?
Fill in the volunteer form below and choose “Global Ambassador” as your interest.
Go to the volunteer form ↓
In their element

Volunteers who love what they do

A grinning volunteer giving a thumbs up with campers on a day out
Best week of the year
A volunteer laughing as a camper paints his nails at camp
A grinning counselor holding campers' crutches at camp
A volunteer paddling alongside laughing campers at Camp Perthes UK
On the water together

Our volunteers are adults who had Perthes and parents who've been there — giving their whole hearts, one camper at a time. 💛

I had Perthes as a kid and felt so alone. Volunteering at camp is my way of making sure no child feels that way again — I leave every summer with a fuller heart.

Marcus · adult who had Perthes, camp counselor

Watching my daughter meet other kids who limp like her changed everything. Now I help run our local meetups so more families feel that relief sooner.

Priya · Perthes parent & Global Ambassador

I gave a few weekends designing flyers and it turned into years. You don't need medical skills — just a willingness to show up for these incredible kids.

Dana · skills volunteer since 2019
Express interest

Interested in volunteering?

Applications aren't open right now — but we'd love to know you're interested. Leave your details and we'll reach out when volunteer opportunities open up. Our volunteers come from every walk of life — doctors, teachers, coaches, nurses, therapists, firefighters, coders and more — and adults who had Perthes as a kid are especially encouraged.

Camp volunteers must be age 19+ (college credit available)
A background check is part of the process
Medical, teaching or coaching backgrounds are a big plus
Food & accommodations provided for selected volunteers
Teens 16–18 who've attended 2+ camps can train as a CIT
You'll apply to the camp nearest your home country
🏕️ Campers & 🦸 Volunteers Keep me in the loop Leave your details and we'll reach out the moment volunteer applications open. Sign Up ▾

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Fundraise

Raise money your way, for Perthes kids

Turn a birthday, a race, or a school dress-down day into camp scholarships and family support. We'll send you a starter kit and cheer you on.

🎂
Birthday for Perthes

Ask for donations instead of gifts.

🏃🏽‍♂️
Run / walk / ride

Dedicate your next race to a Warrior.

🧁
Bake & make sales

Classic, and kids love running them.

👕
Dress-down day

Rally your school or workplace.

We'll send a free fundraiser toolkit with logos, tips, and a donation page.

Get the Perthes Brief

Quick updates on camps, fundraising, research, and special events — straight to your inbox.

Contact

We're here to help

Wherever you are in the world, the Perthes family is ready to welcome you. Reach out anytime.

Send us a message

Reach us by email

We're a global, volunteer-run nonprofit and work primarily online — email is the fastest way to reach us.

✉️ General & support — info@pertheskids.org
🇪🇸 En español — espanol@pertheskids.org
🎙️ Media & press — info@pertheskids.org

📮 Prefer to donate by check? Email us and we'll share our mailing address.

We're a volunteer team — we usually reply within 2–3 business days.

Federal Tax ID: 47-3841121

🇦🇺 Australia & NZ
Sydney, NSW, Australia
🇬🇧 United Kingdom
Charity #1188505
🌎 Latin America
Bogotá, Colombia
Fastest help

Not sure where to start? Jump right in.

🌎
Find families near you
Open the global Locator.
Perthes Kids Foundation
Perthes Kids
Foundation

The world's leading patient support charity for Legg-Calvé-Perthes disease. A 501(c)(3) global nonprofit. You are not alone.

#PerthesStrong #PerthesWarrior #Perthes
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Locator
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Global offices
🇺🇸 Los Angeles, USA (HQ)
🇦🇺 Sydney, Australia
🇬🇧 Staffordshire, England
🇨🇴 Bogotá, Colombia
💛 Powered by a global community of volunteers, driven by our mission to help Perthes kids. We believe in transparency — financial statements are available on request.
© {{ year }} Perthes Kids Foundation · Tax ID 47-3841121 · 501(c)(3) Privacy Policy · Terms of Use Educational content only — not a substitute for professional medical advice.
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