An international community for young adults living with Fabry
Living with Fabry disease can sometimes feel isolating.
Whether you’re navigating studies, work, relationships, treatment, family planning, or simply figuring out what comes next, you don’t have to do it alone.
The FIN Young Adults Community brings together young adults from around the world to connect, learn, share experiences, support one another and build meaningful friendships with people who genuinely understand.
There is no pressure to have all the answers. Just come as you are.
seen
supported
connected
empowered
What you’ll find here
What we talk about
Managing Fabry alongside studies or work
Created by and for Young Adults
Our Young Adults Guidebook was developed together with young adults living with Fabry disease. A plain-language e-guide to the parts of life with Fabry that don’t always get talked about.
Inside you’ll find practical information, personal experiences and resources covering many of the questions and challenges that come with young adulthood and Fabry.
Free to download.
Free to share.
What’s inside?
Voices from our community
“Meeting others with Fabry made me realise I wasn’t the only one feeling this way.”
“The community helped me feel more confident talking about Fabry.”
“Connecting with people from different countries showed me I wasn’t alone.”
“It was like meeting the family I never knew I had.”
“I now have friends all over the world, not only to talk to but I’ve learned so much from them.”
What we do
Join the community
Whether you’ve recently been diagnosed, have grown up with Fabry disease, or are simply looking to connect with others who understand what life with Fabry is like, we’d love to welcome you.
If you are between 18 and 32 years old, you can join our growing international community free of charge. As a member, you’ll receive invitations to online & F2F meet-ups and community events, updates on new resources and opportunities, and the chance to connect with young adults from around the world who share similar experiences.
Wherever you are in your journey, you don’t have to navigate it alone.
Follow on Instagram
Community stories, resources, events and opportunities to connect with young adults living with Fabry disease around the world.
Help shape what comes next
Found a topic missing? Want to help write the next edition of the guidebook, or contribute to an event?
Questions, answered
Guidebook
The Young Adults Community is part of Fabry International Network (FIN), an international organisation connecting Fabry patient communities around the world.
Together with our member organisations, we work to support, educate and empower people affected by Fabry disease through connection, collaboration and shared experiences.
Help us spread the word
Are you part of a patient organisation, advocacy group, healthcare community, media outlet, or partner organisation?
We have prepared a range of ready-to-use communication materials, including social media graphics, newsletter content, and sharing resources, to help you introduce the guidebook to your community.
Contact us at coordinator@fabrynetwork.org to request a communications kit.