Every year we bring patients together online or F2F where they will receive valuable, up-to-date information about Fabry disease as well as on-going clinical trial updates and new trial opportunities. There’re opportunities to network with others, ask questions, speak with pharmaceutical representatives and learn from the experts. We always have an excellent line-up of informational presentations, breakout sessions, workshops.
Fabry Awareness Month
April is Fabry Awareness Month. During this month we raise awareness for Fabry disease by educating patients, caregivers, healthcare professionals and the wider population about the condition and treatments available which will hopefully result in a greater understanding of the impact of Fabry disease and earlier diagnosis and management for patients.
To inform the Fabry community about medical developments in Fabry disease, FIN initiated Fabry Findings, in these issues we ‘translate’ clinical information into lay language that can be digested and easily understood.
Empowers people living with and affected by Fabry with relevant and useful knowledge about Fabry disease. We encourage our members to translate the articles into their respective language for distribution amongst their communities.
Fabry Women’s Day
Every first Saturday in April we honour all women living with Fabry Disease on International Fabry Women’s day. This day was established to raise awareness about women and girls affected by Fabry Disease and how females are not just ‘carriers’ and to provide peer support.
Join us and the Fabry community on this day by celebrating this day!
FIN awards a patient (association) led initiative that informs and educates the Fabry community and helps raise awareness with a grant.
FIN wants to encourage the membership to organise activities and initiate projects by contributing financially and offering a platform to share with the wider community.
Criteria: educate and raise awareness & bringing patients together
FIN organises regular webinars for the membership focused on patients informing the community on important and relevant topics with international Fabry experts with topics that are relevant to the Fabry community with Fabry experts. We also want to focus on topics where we see the patients a more than just Fabry.