Hi there!
Fabry International Network is very committed to training the next generation of patient advocates and also providing a platform for young adults to get in contact with each other, to share their experiences and learn from each other.
FIN aims to build a community and train the next generation of patient advocates, connect young adults from all over the world and form a highly motivated group of 21-32 year old’s from the rare disease community. The main purpose is to instill confidence in the next generation of rare disease advocates by providing skill building opportunities to advance young adults in the next steps of their advocacy journey.
Currently we have young adults from all around the world joining the community. Amongst them, young adults from The Netherlands, Italy, Armenia, Germany, Spain, Canada, South-Korea, Taiwan, Poland, Tunisia, Morocco, Argentina etc..
Learning patient advocacy skills will allow you not to be limited by Fabry but to be empowered by a community of patient advocates to live the life you want to lead!
Limitations can transform into opportunities to change things for yourself and the next generation!
For 2025 we again plan 2.5 day weekend where we invite young adults and address topics to participate in educational workshops on personal and professional development, using your skillset to improve the life of Fabry patients, mental health, challenges and best practices, and of course try new activities, speak to like-minded people, take part in a social event, make friends, and have fun. There’s also time to relax and unwind.
In order to be able to participate in the young adults weekend, young adults should have attended at least 2 of the online meetings in 2025 and are or plan to be an active and engaged member of the young adults group. The Young Adults Weekend & group activity and the online meetings are for young adults only.
We can already share the dates and timings for the upcoming online meetings as well as the date for the young adults weekend in 2025.
Online Meetings 2025
- Saturday Feb 15th – 12pm-1.30pm CET
- Saturday March 29th – 12pm-1.30pm CET
- Saturday June 28th – 12pm-1.30pm CET
Young Adults Weekend 2025 September 26-28th – Antwerpen, Belgium
Want to join the FIN Young Adult Community (21-32)? Contact us for more information via email at coordinator@fabrynetwork.org or complete the form via the button here below!