FIN Fabry Expert Meeting

FIN Fabry Expert Meeting 2024, a genuine reflection by our FIN Director, Tatevik Yezekyan

Finding inspiration often comes from those who face adversity. A rare disease may present challenges, but it also brings a unique perspective. There is a certain authenticity in the comfort found in understanding without needing to elaborate, in lightening the weight of thoughts, in finding answers to enduring questions. The value of care and empathy is sometimes missed in everyday life, yet it shines brightly in the lives of those dealing with a rare disease…

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Thank you for your participation in the FIN Expert Meeting 2023! We welcomed more than 70 participants from 15 different countries.

It was so good to connect again in person and we hope that you found the workshops, presentations and member sessions as interesting as we did!

We also wanted to thank you for your positive feedback which we value and we will take your recommendations for future meetings with us.

Want to learn more about the content of the meeting? Make sure to download the report!

Thank you for your participation in the FIN Expert Meeting 2022! We welcomed more than 220 participants from 32 different countries. The platform was available for another 30 days after the meeting, which a lot of you found very helpful.

It was so good to connect again and we hope that you found the presentations as interesting as we did!

We also wanted to thank you for your positive feedback which we value and we will take your recommendations for future meetings with us.

The presentations from the meeting remain available on the FIN YouTube Channel.

Thank you for your participation in the FIN Expert Meeting 2021! We welcomed more than 200 participants from 29 different countries. The platform was available for another 30 days after the meeting, which a lot of you found very helpful.

It was so good to connect again and we hope that you found the presentations as interesting as we did! We want to thank you for your participation in the FIN Expert Meeting!
There was so much valuable information to be found and downloaded at the exhibition! We learned about Fabry and its impact on sleep, about current and emerging treatments, Fabry & Nutrition and much more.

We also wanted to thank you for your positive feedback which we value and we will take your recommendations for future meetings with us.

The presentations from the meeting remain available on the FIN YouTube Channel.

In 2019  the Expert Meeting was held from May 24th to 26th in Spain – in the capital of Catalonia – beautiful Barcelona and was hosted by the president of the society for Mucopolysaccharide Diseases in Spain, Jordi Cruz, who also gave a presentation about the association he represents. During the meeting we had 78 attendees and among them there were patient organisations‘ leaders, physicians who are real professionals and have a tremendous expertise level in the field of Fabry disease and representatives of the pharmacy companies. This team led us all to experience interesting presentations, discussions and casual conversations not only during the meetings but also during the dinners.

We had two patients speaking – Francisco Albiol who is a Fabry patient from Spain and Wojciech Nadolski – a Fabry patient from Poland. Francisco told us his personal story of Fabry disease and what he had to experience during his journey to diagnosis and treatment. Wojciech guided us through the difficulties they face in Poland where reimbursement for treatment is not provided and this leads many people to develop severe symptoms. He also told us about very interesting initiatives they do to raise awareness about the disease among the government officials.

Doctor Nadia Ali told us about the psychological impact of Fabry disease and about Fabry fog. She also gave us a glimpse to the cognitive function examination procedures and informed that she is coordinating a 12 hour-long cognitive testing for Fabry patients.

Professor Dominique Germain gave a really clear and understandable description of X chromosome inactivation so to say the scientific basis of the Fabry woman. He also gave a presentation about family planning when one of the partners have Fabry Disease.

A representative from the Japanese association presented the results of their survey related to Fabry disease. We were also updated on kidney, heart, pain issues and other interesting topics.

This year’s Fabry Expert Meeting also had a new initiative – a day dedicated to workshops. We had topics such as “Understanding the psychological needs of Fabry disease“, “Symptom management“, “Let‘s talk Fabry men“ and “Let‘s talk Fabry women“. All the patients and their caregivers were divided in to smaller groups to discuss one particular topic and each participant could choose three workshops to participate in. FIN is working on a summary report based on the outcome of the workshops and will share this in the next newsletter. Participant feedback highlighted the desire for continuing the workshop program at future meetings.

As during all past meetings, the annual general meeting of the membership was held to discuss Fabry International Network matters and also re-elected 3 directors of the board for the three-year term. Of course the FIN board and pharmacy companies meetings prior to the Fabry Expert Meeting are to be mentioned. During these we received updates concerning what is happening in the area of treatment and discussed how the industry partners could help us accomplish FIN’s mission – “a world where every single person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment and cure“. We will share that information among the membership through our newsletter, website and future meetings.