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.

Young Adults Community

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.

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.

Fabry Findings

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.

International
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!

#internationalfabrywomensday

FIN Award

FIN awards a patient (association) led initiative that informs and educates the Fabry community and helps raise awareness with a financial 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 Fabry affected people together.

The awardee for 2024 is the Czech Fabry Organisation for their annual patient meeting. The aim of this meeting is to bring patients together and  educate them by bringing in Fabry experts talking about the symptoms, diagnosis, and treatment, as well as advice for a better quality of life and other aspects of the disease.

The awardee for 2023 is Rare Disease Croatia for their educational and awareness project ‘Little big signs of diagnosis’. The idea was born through their cooperation with a team of medical students. It is a long-term project in which students answer medical questions that they receive through Croatian Helpline for rare diseases. The aim of this project is to create a ‘rare library’ with materials for students of medicine, industry partners, physiotherapist and many more in the field. The materials will include short videos that will explain the first and most important symptoms of Fabry disease that patients can remember and associate with the diagnosis. The symptoms will be explained by the patients themselves or their family members. They will also film experts talking about the first symptoms, diagnosis, and treatment, as well as advice for a better quality of life, as well as other experts, talk about other aspects of the disease, help and support.

The awardee for 2022 is the Polish Fabry organisation. They are working on an ABC Guidance – First Steps for Fabry patients in Poland. The objective is to provide clear instructions what to do and how to do it to get the proper Fabry diagnosis and start treatment. They aim to also translate this to Ukrainian and distribute it to medical facilities, social media, Fabry patients etc.

ATML (Tunisia) was granted the FIN award for a series of videos that follows patients and explain their daily struggles, so that anyone that sees what they are going through can understand their condition without being overwhelmed by scientific details. These videos are now available on their social media channels and they are looking for support to help them translate and subtitle the videos.

Webinars

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.