- Welcome To PSF
Proteus Syndrome Foundation International
We are composed of families who connect with each other through the foundation and professionals who work tirelessly to help find effective treatments for Proteus.
UK Chapter
Phone Number:
+1 (202) 555-0143
In Premium Cottage Services
Create lifelong memories with loved ones in our comfortable cottages surrounded by breathtaking scenery.
- About Us
Register for the PSF Family Conference. August 13-14, 2026 ~ National Institutes of Health
You can change the dates for your conference stay. Just click EDIT STAY and put in the dates you would like. You will get the PSF rate for those days.
Proteus Syndrome Foundation
Welcome to the Proteus Syndrome Foundation (PSF). We’re a community of families, caregivers, clinicians, and researchers united by a single purpose: ensuring no one faces Proteus syndrome alone. Our work brings people together, drives progress, and provides real support at every stage of the journey.
Through our family conferences, our PSF camp retreat, and medical assistance programs, we create spaces where families can connect, learn, and lean on one another. Proteus syndrome can feel overwhelming and isolating — but with the PSF behind you, you will always have a place to turn, people who understand, and a network committed to moving care and research forward.
You’re welcome here. Let’s move forward together.
NEWLY DIAGNOSED? Follow this link to help you and your medical team understand Proteus syndrome.
- Involvement
How To Get Involved
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Donate
Donate Via PayPal or with Credit Card or send a check to us.
Patient Registry
To inform individuals with Proteus Syndrome and their caregivers.
Connect With Us
Connect with us now and we'll respond promptly.
Subscribe
Receive the PSF Quarterly Newsletter and other general emails from the foundation
- Events
Fund Raising events
Wheels for Jeffrey
Recently Jeffrey's power wheelchair failed him. The brakes on his wheelchair stopped working, causing an accident that resulted in a trip to the hospital. Thankfully, Jeffrey was not seriously injured, but the incident highlighted a reality he faces every day: his current wheelchair is no longer safe or reliable.
2026 Swing Fore Sunshine
Event Details: SOLD OUT
Cost per team $950.00
DRESS TO IMPRESS - OR TO DISTRACT! PRIZE FOR THE WINNING TEAM. Voted on by Swing for Sunshine Volunteers.
2025 Swing Fore Sunshine
Event Details: SOLD OUT
Cost per team $950.00
DRESS TO IMPRESS - OR TO DISTRACT! PRIZE FOR THE WINNING TEAM. Voted on by Swing for Sunshine Volunteers.
Experience Nature Cottage Living Today
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- Who we are
About the Proteus Syndrome
Proteus syndrome is a rare disorder characterized by overgrowth of various tissues of the body. The cause of the disorder is a mosaic variant in a gene called AKT1. Disproportionate, asymmetric overgrowth occurs in a mosaic pattern (i.e., a random “patchy” pattern of affected and unaffected areas).
Who We Are
Welcome to the Proteus Syndrome Foundation (PSF). We are composed of families who connect with each other through the foundation and professionals who work tirelessly to help find effective treatments for Proteus. The PSF provides support through family conferences, family sharing through our (new) PSF Forum on our web page, and grants for families in need of assistance. Proteus syndrome can be an isolating syndrome, but as we come together under the PSF umbrella, we will never stand alone.
Connect with Us
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- Testimonials
Real Experiences Shared by Our Happy Guests
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4.9 / 5 Guest Ratings
Based On 1,200+ Reviews
- Our Team
Our Experienced Hospitality Professionals Team
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John Anderson
Chief Executive Officer
Emily Carter
Senior General Manager
Michael Thompson
Head Operations Manager
Olivia Bennett
Guest Experience Manager
- Pricing
Flexible Pricing Plans For Every Type Traveler
ESCAPE PLAN
Perfect for solo travelers and couples looking for a cozy, peaceful hideout.
- Standard A-Frame wooden cottage.
- Complimentary organic breakfast.
- Access to shared bonfire area.
- Guided morning forest walk.
- High-speed Wi-Fi & workspace.
REFRESH PLAN
Our most popular plan for small families who want to experience premium wilderness.
- Luxury lake-view double cottage.
- Private bonfire & barbecue setup.
- 24/7 dedicated local guide support.
- Free access to mountain cycling.
- Premium open-air jacuzzi access.
SANCTUARY PLAN
Ultimate luxury experience hidden deep inside the forest with premium amenities.
- Premium multi-bedroom eco lodge.
- Personalized chef & custom dining.
- Private forest trekking & camping kit.
- All-inclusive wellness & yoga sessions.
- Free airport pickup & drop service.
- FAQs
Common Questions About Proteus Syndrome Foundation International
What is Proteus Syndrome Foundation International?
What is Proteus syndrome?
Proteus syndrome is an extremely rare genetic condition that causes abnormal and progressive overgrowth of bones, skin, connective tissue, and other parts of the body. Symptoms vary widely from person to person, making specialized medical care essential.
How rare is Proteus syndrome?
Proteus syndrome is one of the rarest genetic disorders, affecting fewer than one in one million people worldwide. Only a few hundred cases have been identified globally.
What services does the foundation provide?
The foundation offers family support, educational materials, patient advocacy, research funding, networking opportunities, conferences, medical assistance programs, and resources to help individuals and families navigate life with Proteus syndrome.
Who can benefit from the foundation's resources?
Individuals living with Proteus syndrome, family members, caregivers, healthcare professionals, researchers, and anyone seeking reliable information about the condition can benefit from the foundation’s programs and resources.
How can I connect with other families affected by Proteus syndrome?
The foundation helps connect families through support networks, online communities, conferences, and events where members can share experiences, resources, and encouragement.
Does the foundation support medical research?
es. A major part of the foundation’s mission is funding research, including studies focused on the AKT1 gene and potential treatments that may improve the lives of people living with Proteus syndrome.
Can I donate or volunteer?
Yes. Donations and volunteer support help the foundation fund research, provide family assistance, organize educational events, and expand awareness initiatives for the Proteus syndrome community.
- Blog
Articles
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Raising Awareness for Proteus Syndrome Makes a Difference
Raising Awareness for Proteus Syndrome Makes a Difference Although Proteus syndrome affects only a small number of people worldwide, raising
How Proteus Syndrome Foundation International Supports Families
How Proteus Syndrome Foundation International Supports Families Receiving a diagnosis of Proteus syndrome can leave families searching for answers, guidance,
Understanding Proteus Syndrome: A Rare Genetic Condition
Understanding Proteus Syndrome: A Rare Genetic Condition Proteus syndrome is an extremely rare genetic disorder that causes disproportionate and progressive
In Loving Memory of
Alexander Hoag
7/5/90 - 9/20/99
"He did a lot in 9 short years."
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