National Fabry Disease Foundation (NFDF)

10/09/2026

One of our greatest challenges is identifying people with undiagnosed Fabry disease so they can be tested, evaluated, and treated as needed.

We are dedicated to helping people with Fabry disease live better and longer lives!

Many people go undiagnosed for years while they struggle to understand their many Fabry symptoms that cause a poor quality of life and potentially life-threatening complications, unaware of why. Fabry disease has a definitive lab test and is treatable.

We must try to reach the unaware, undiagnosed people who need our help!

Please share this video to help reach the undiagnosed Fabry community. You can help to improve and save lives! Share this video with everyone you know and ask them to share it with everyone they know. Undiagnosed Fabry disease is hiding all around the world.

https://youtu.be/MNp7qu-_h7Y

If you know you have Fabry disease, see our Linktree for information and resources at https://linktr.ee/thenfdf

Best wishes,
Jerry Walter, Founder and President, National Fabry Disease Foundation
www.fabrydisease.org

Please help us find people with undiagnosed Fabry disease by lookin...

09/29/2026

Hi everyone,

Our 15th annual Fabry Family Weekend Camp at Victory Junction in Randleman, NC, in September was a tremendous success! After months of preparation, it went by so quickly. We are sharing information and photos so you can enjoy the magic with us.

We couldn't have held this special event without our three major sponsors, who made it possible. Thanks you!

The NFDF Team (Jerry and Casey)

09/25/2026

We are happy to share that PTC Therapeutics has completed the previously announced agreement with Sangamo Therapeutics, Inc. to acquire ST-920.

Please read more at the link below.
https://ir.ptcbio.com/news-releases/news-release-details/ptc-completes-acquisition-st-920-fabry-disease-gene-therapy

The NFDF team (Jerry and Casey)

09/24/2026

Thank you to our generous sponsors who make the National Fabry Disease Foundation Fabry Family Education Conference possible!

09/24/2026

We have more information and many more photos to share from our recent conference and camp, but I could not wait to share this video. At our Victory Junction stage night on Saturday, Dr. Eric Wallace, Dr. Rob Hopkin, Dr. Staci Kallish, and genetic counselors Dawn Laney, Gwen Gunn, and Rylee Barrett performed a special song, with Dr. Wallace playing the piano and singing, Dr. Rob handling the microphone, and the others as backup dancers. They were awesome! We are so fortunate to have amazing people like this supporting the Fabry community. Jerry Walter

09/23/2026

Hi everyone,

Here are the first photos of the National Fabry Disease Foundation's 16th annual Fabry Family Education Conference and 15th annual Fabry Family Weekend Camp. We had two amazing events in North Carolina from September 15 to 20, 2026.

We'll share more information and photos soon. It doesn't get any better than this!

The first photo is everyone at the conference with Fabry disease.
The second photo shows everyone at the conference.
The third photo is the Fabry Family Camp photo at Victory Junction.

There is much more to come! Enjoy the magic with us!

The NFDF team (Jerry and Casey)

09/01/2026

Please join Dr. Anjay Rastogi and the UCLA Core Kidney Team today, September 1st, 2026, at:

5:00 - 6:00 p.m. PT (8:00 - 9:00 p.m. ET)

The UCLA Health CORE Kidney Team Presents:
IgA Nephropathy: What a patient should know

Register: tinyurl.com/rastogi-chat

Please register using the link above. The link in the image below is inactive.

The NFDF Team (Jerry and Casey)

08/21/2026

Hi Everyone,

Please join us on Monday, August 24th at 7:00 PM ET for an informational webinar on disability benefits in the United States, tailored for the Fabry disease community.

We will be joined by Laura Beilke, Esq, staff attorney at Triage Health. She will provide information about how to prepare for and access disability benefits related to Fabry disease symptoms and treatment in the U.S. 

Register for the meeting here:
https://us02web.zoom.us/meeting/register/_WmhvY6dSW-57bvk3-vlx . Please use the link above to register, not the inactive link in the image below.

Details about the schedule, speakers, and registration links are available on our webinar website: https://tinyurl.com/nfdfwebinar

Each virtual meeting is approximately 60 minutes. Invited speakers will spend about 30 minutes presenting the topic, followed by time for questions and discussion. The primary audience for these meetings is individuals with Fabry disease, their family members, and caregivers. Primary attendees are invited to ask questions and actively participate in the webinars.

We also encourage others connected to the Fabry disease community to register and attend as “Other Attendees.” Other attendees may include Fabry healthcare providers and clinical staff, support organization representatives, and industry representatives. They participate as observers only.

Webinars will be recorded and available to view on our YouTube channel.

We'll see you soon,
The NFDF Team

Contact the NFDF by email at [email protected] or by phone at 800-651-9131.

08/06/2026

Hi Everyone,

The National Fabry Disease Foundation is pleased to host a webinar with the Patient Advocate Foundation, discussing their assistance program available to individuals living with Fabry disease in the United States.

On Monday, August 10th at 7:00 pm ET we will be joined by Jessica McLaughlin, PharmD, a Clinical Affairs Specialist at the Patient Advocate Foundation (PAF). The presentation will provide an overview of the Fabry disease grant programs available at PAF, followed by detailed information about how to determine eligibility, submit a new request, and renew an existing grant with PAN (prior to its merger with PAF).

Register for the meeting here:
https://us02web.zoom.us/meeting/register/MVY3hTETQBupgEz5pY3EDQ

Details about the schedule, speakers, and registration links are available on our webinar website: https://tinyurl.com/nfdfwebinar

Each virtual meeting is approximately 60 minutes. Invited speakers will spend about 30 minutes presenting today's topic, followed by time for questions and discussion. The primary audience for these meetings is individuals with Fabry disease, their family members, and caregivers. Primary attendees are invited to ask questions and actively participate in the webinars.

We also encourage others connected to the Fabry disease community to register and attend as “Other Attendees.” Other attendees may include Fabry healthcare providers and clinical staff, support organization representatives, and industry representatives. They participate as observers only.

Webinars will be recorded and available to view on our YouTube channel.

For more information about NFDF programs and social media channels, please see https://linktr.ee/thenfdf .

We'll see you soon,

The NFDF Team

Contact the NFDF by email at [email protected] or by phone at 800-651-9131.

07/15/2026

Hi Everyone,

The National Fabry Disease Foundation is excited to host Dr. Lucy Cobbs on Monday, July 20th at 7:00 pm ET for the next installment of our webinar series.

Each virtual meeting is approximately 60 minutes. Invited speakers will spend about 30 minutes presenting today's topic, followed by time for questions and discussion.

On Monday, July 20th at 7:00pm ET we will be joined by Dr. Lucy Cobbs as she reviews details about the ocular (eye) manifestations of Fabry disease.

Register for the meeting here:

https://us02web.zoom.us/meeting/register/NF3qZGx1SwSTW9O_gJYtpg

Please register with this link, not the inactive links in the image below.

Details about the schedule, speakers, publications, and registration links are available on our webinar website: https://tinyurl.com/nfdfwebinar

The primary audience for these meetings is individuals with Fabry disease, their family members, and caregivers. Primary attendees are invited to ask questions and actively participate in the webinars.

We also encourage registration and attendance by others who are connected to the Fabry disease community as “Other Attendees.” Other attendees may include Fabry healthcare providers and clinical staff, support organization representatives, and industry representatives. They participate as observers only.

Webinars will be recorded and available to view on our YouTube channel.

We'll see you soon,

The NFDF Team

Contact the NFDF by email at [email protected].