Fabry Disease
Symptoms
There are many common Fabry disease symptoms that could lead to diagnosis and many symptoms to manage. They vary greatly among individuals.
Fabry Family Weekend Camp
Our camp is usually in September or October at Victory Junction in Randleman, NC.
We Need to Recognize and Rescue Everyone
Please participate in our Fabry disease education and awareness initiatives.
Welcome to Our Mothership!
Our website remains at the center of our education and outreach programs.
Patient Reported Outcomes (PROs) Program
We are learning from the PROs (individuals with Fabry disease)!
Did You Know?
The NFDF provides many Fabry community programs?
In Their Honor
Our community is full of strength, courage, contribution, and hope.
The International Fabry Community
Our fight with Fabry Disease does not have geographic boundaries.
Alaska Department of Public Health
- 3601 C Street, Suite 322 | Anchorage, Alaska 99503
- 907-269-3430
-
joanne.singleton@alaska.gov
Map Location
Description
Type
Service Provider
Department:
Metabolic Clinic
Population:
Extra Small
Patient Demographic:
Children only
Facility Website:
Team
Team
Joanne Singleton
Fabry Community Announcements
-
2026 Webinar Series Information
Select the Read More link below for the 2026 Webinar Flyer to easily view and share our resources with everyone. -
2025 End of Year Fabry Focus e-Newsletter
Select the link below to the December 2025 Fabry Focus e-newsletter. Best wishes in 2026! Jerry, Casey, and Hannah -
16th Annual Fabry Family Education Conference on September 17-18, 2026
The National Fabry Disease Foundation's 16th annual Fabry Family Education Conference will be held on September 17-18,... -
15th Annual Fabry Family Camp at Victory Junction Camp on September 18-20, 2026
The National Fabry Disease Foundation's 15th annual Fabry Family Camp will be held on September 18-20, 2026, at...
WHY EARLY DIAGNOSIS AND TREATMENT ARE SO IMPORTANT!
Thanks for your support!
As an IRS 501(c)(3) non-profit charitable organization we rely on donations from organizations and individuals to provide meaningful programs and services to people/families with Fabry disease. Please give generously!
Thank you to our corporate/business sponsors as well as our many individual donors. Contributions of all sizes add up to make a tremendous difference.
Do You Have Questions?
Select the button below to see the answers to Frequently Asked Questions.
Founder's
Corner
We continue to make great progress on finding new ways and improving current ways to support our community. We hope our efforts contribute to making your lives better! Founder and President, Jerry Walter
Join the Fight
We need you!
Join the fight against Fabry disease! Make your voice count to create positive change for people with Fabry disease and our families. One important way to help is to take our surveys for everyone's benefit.
Our
Supporters
We are very grateful for the generous contributions of our corporate, organization, business and individual donors who all make our programs possible. Every size donation matters.
Two Support
Organizations
The Fabry community is fortunate to have two complimentary support organizations providing a diverse set of programs and services. Join the Fabry Support & Information Group also.
Featured Programs
Fabry Disease
Victory
Junction
Each September or October the NFDF hosts our annual Fabry Family Weekend Camp. Families with a 6-16 year child with Fabry disease may attend.
Family Assistance
Program
Individuals with Fabry disease and family members are invited to use our free, confidential, 24/7 Family Assistance Program. Counselors are there now.
Our YouTube
Channel
The NFDF produces educational videos about a variety of topics related to Fabry disease. Please see our current videos and stay tuned for more!
Document
Archives
Are you looking for something you read sometime in the past? Find previously published newsletters and other documents here.
Fabry Disease
Publications"
The NFDF obtains licenses to various peer-reviewed medical publications about Fabry disease to provide free online access to our members.
Find A Fabry
Specialist
Use our convenient search application and map locator to find a Fabry specialist near you. Please contact info@fabrydisease.org to provide physician info.
Remembering
Family & Friends
Please take a moment to remember family and friends who have passed away from Fabry disease. We keep them in our thoughts and prayers!
Featured Resources
Faces of Fabry
©
2002 - 2026
National Fabry Disease Foundation
Alaska Department of Public Health
Service Provider