Website: https://fabrynetwork.org/youngadults
Instagram Young Adults: @fabryyoungadults
Instagram FIN: @fabryintnetwork

11 June 2026 – FIN launches international Young Adults Guidebook created by and for young adults living with Fabry disease.

Young adulthood is challenging for anyone. For people living with a rare disease like Fabry disease, navigating work, relationships, independence, healthcare transitions and future planning can feel especially isolating. To address this gap, the Fabry International Network (FIN) has launched the first international guidebook created by and for young adults living with Fabry disease.

Developed over 18 months with input from young adults across the global Fabry community, the FIN Young Adults Guidebook covers topics including transition to adult care, work and study, relationships and disclosure, family planning, mental health, and treatment routines.

Unlike traditional clinical resources, the guidebook focuses not only on medical information, but on the social, emotional, and practical questions young adults often face during major life transitions.

“This guidebook was built with young adults, not simply for them,” said Anna Meriluoto, Vice President Fabry International Network. “We repeatedly heard that many people felt alone in navigating adulthood with Fabry disease, especially around topics like disclosure, relationships, or planning for the future. We wanted to create something that felt honest, supportive, and genuinely useful. When I was diagnosed, I could find information about Fabry disease, but very little about how to actually navigate life as a young adult. Reading experiences from others made me feel less alone.”

The guidebook is free to access globally and forms part of FIN’s broader Young Adults initiative, an international programme focused on peer connection, education, visibility, and support for young adults living with Fabry disease.

About the FIN Young Adults Community

The guidebook forms part of the broader FIN Young Adults initiative, an international space for young adults living with Fabry disease to connect, share experiences, and shape future projects together.
Alongside educational resources, the initiative includes:

• online meetups and webinars
• peer connection opportunities
• international in-person events
• collaborative projects
• future community-led resources

Key facts & statistics

• FIN connects 61 patient organisations across 57 countries
• The guidebook was co-created over 18 months
• Young adults from multiple countries contributed through interviews, workshops and peer review
• The guidebook is freely available worldwide
• The resource forms part of FIN’s growing international Young Adults program

Why this story matters

1. A first-of-its-kind guidebook created specifically for young adults living with Fabry disease.

2. Why young adults with rare diseases often feel overlooked during major life transitions.

3. The everyday realities of living with Fabry disease beyond medical symptoms: relationships, work, mental health, and future planning.

4. How young adults from the global Fabry community helped shape a peer-written international resource.

5. The growing importance of community-led and experience-based resources in rare disease care.

6. Building an international Young Adults community within the Fabry space.

7. Why practical, plain-language resources matter alongside clinical care.

8. A new global initiative helping young adults living with Fabry disease feel less alone.

Key messages

1.  “Made by the community, not just for it.”

2. “The topics no one talks about.”

3. “Free, global, and built to share.”

4. “A starting point, not a substitute.”

Quotes

“This project reflects something we hear often from young adults in our community: ‘I wish I’d had this earlier.’ We hope this guidebook helps people feel less alone and more supported during an important stage of life.”
-Anna Meriluoto, Vice President, Fabry International Network

“Reading experiences that sounded like mine made a huge difference. It felt like someone finally understood the parts of Fabry that don’t get talked about enough.”
-Young Adult Contributor

“Growing up with Fabry disease, I often had questions that weren’t answered in medical appointments. As I entered adulthood, I found myself wondering how to talk about Fabry with friends and partners, how to plan for the future, and whether other young people were facing the same challenges. Being able to connect with others who understood made a huge difference. That’s why resources like this guidebook matter, they help young adults feel less alone.”
-Young Adult Contributor

“Living with Fabry disease affects much more than your health. Like many young adults, I had questions about relationships, work, future planning, and simply navigating everyday life. Reading experiences from others who had been through similar situations helped me feel less alone. That’s what makes this guidebook so valuable.”
–Young Adult Contributor

About Fabry International Network (FIN)

The Fabry International Network (FIN) is an independent international umbrella organisation supporting Fabry patient organisations around the world.

FIN currently connects 61 patient organisations across 57 countries and works to improve awareness, diagnosis, education, access to care, patient support, and international collaboration within the Fabry community.

Final note

This guidebook is only the beginning. It forms part of FIN’s broader commitment to creating connection, visibility and support for young adults living with Fabry disease around the world.