Fabry Webinar Series

Welcome!

The National Fabry Disease Foundation (NFDF) is excited to announce a refresh to its virtual education meeting series in 2026!

In this series, we will be diving into the Fabry disease literature and reviewing recent medical publications. We’ve invited some of our favorite Fabry disease experts to provide a patient-level overview of a notable publication (aka article) in their field of specialty.

Each virtual meeting will be approximately 60 minutes. Invited speakers will spend about 30 minutes breaking down the key points of the publication, followed by time for questions and discussion.

SCHEDULE

SPEAKERS

PDFS

The primary audience for these meetings is individuals with Fabry disease, their family members, and caregivers. These 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.

Most webinars will be recorded and available to view on our YouTube channel. In rare instances, for example, if a presentation includes proprietary information, the webinar may only be available live. This will be noted on the schedule, please check the individual meeting details to determine if a recording will be available.

About The National Fabry Disease Foundation

The National Fabry Disease Foundation (NFDF) is an IRS 501(c)(3) nonprofit charitable organization dedicated to supporting the Fabry disease community. Our five primary functions are assisting with Fabry disease education, facilitating Fabry disease identification to improve Fabry disease recognition and diagnosis, providing various forms of assistance to individuals with Fabry disease, supporting Fabry disease research, and promoting advocacy for Fabry disease issues.

Please sign up for our email newsletter to stay in touch! https://tinyurl.com/NFDF-news

Website: www.fabrydisease.org

Email: info@fabrydisease.org

Phone: 1-800-651-9131

Facebook: www.facebook.com/FabryDisease

X (Twitter): https://twitter.com/FabryDisease1

YouTube: www.youtube.com/user/TheNFDF

LinkedIn: https://www.linkedin.com/company/the-national-fabry-disease-foundation

Instagram: https://www.instagram.com/nationalfabrydiseasefoundation/

TikTok: https://www.tiktok.com/@nationalfabrydiseasefdn

About Fabry Disease

Fabry disease is a progressive, potentially life-threatening inherited disorder caused by variants in the GLA gene leading to a damaging buildup of lipids in multiple body organs and systems, including the heart, brain, kidneys, lungs, and the nervous, auditory, and digestive systems.

Children with Fabry disease may experience chronic pain in their extremities, reduced ability to perspire, heat intolerance and overheating, and gastrointestinal issues. Adults are at risk of experiencing stroke, kidney and/or heart failure, lung disease, and hearing loss at relatively young ages.

Early diagnosis with genetic testing and treatment is vital to reduce the occurrence of adverse quality of life and life-threatening complications. There are currently three FDA-approved treatments available to reduce symptoms and slow the onset of organ damage.

Fabry disease can affect males and females of all ethnic and cultural backgrounds. Newborn screening for Fabry disease is performed in several states and studies show a higher prevalence than previously expected. This suggests many children and adults remain undiagnosed and untreated.

Reference: Gragnaniello 2023 (PMID: 37367212)

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