Every year FIN supports a member patient (association) led initiative that informs and educates the Fabry community and helps raise awareness with a financial grant.
With this award we’d like to encourage you to organise activities and initiate projects for the Fabry community. The project should focus on raising awareness & bringing patients together. No project or initiative is too small or too big!
In 2021 ATML from Tunisia was granted the award for a documentary that follows patients and explain their daily struggles, so that anyone that sees what they are going through can also understand the condition without being overwhelmed by scientific details. As seeing peers and caregivers or parents living their lives instead of only hearing about symptoms helps people to connect better.
In 2022 we granted the award to the Polish organisation Stowarzyszenie Rodzin z Chorobą Fabry. They developed 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.
In 2023 Rare Disease Croatia has received the FIN award 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 2024 was 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.
Do you want financial support for an activity or project you will be organising in 2025? Apply now and tells us all about your initiative via the form on our website.
Make sure to submit your project before March 7th, 2025.
We look forward to seeing your application!