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Since Fabry disease is a rare genetic disorder, it’s hard for individual patients and caregivers to be heard. It’s always nice to have a support group especially when you are going through a tough time. That’s exactly what FIN strives for. It provides better care and treatment for Fabry patients.
FIN is an independent network of Fabry patient associations whose purpose is to collaborate, communicate and promote best practices to support those affected by Fabry disease. FIN serves as an umbrella organization for 62 patient associations in 54 different countries. In addition, they connect health professionals and ally with industry partners. FIN envisions a world where every single person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment, and cure. The mission, therefore, is to serve as a global, autonomous network of Fabry patient associations that collaborate, share information, and advocate for best practices to aid people who are afflicted by the disease.
The Fabry International Network Meeting 2022 aimed to reach as many people, caregivers, and family members affected by Fabry as possible. The main purpose was to educate and empower this group and also to bring together experts to share best practices. Fabry patients, caregivers, health professionals, and industry representatives could all connect virtually through this meeting.
Charlotte Wauters, the Coordinator of FIN said that they heard about vFairs through one of their partners. Since they are a small organization with a limited budget and staff, they wanted a cost-effective platform. vFairs was their preferred choice because of its user-friendly platform, cost-effective features, and easy setup process.
One of the most highlighted benefits of the Fabry International Network meeting was its accessibility. The virtual event was easily accessible from anywhere in the world. The affected patients, their caregivers, and healthcare workers could all benefit from the Fabry experts with the latest information on the disease.
The Fabry International Network Meeting had some educational sessions which were beneficial to all Fabry patients, healthcare workers, and industry representatives. The pre-recorded sessions were given by experts in the field, with Q&A sessions at the end. The webinars were also made accessible for 30 days after the event went live.
The chat tool at Fabry International Network Meeting was another interactive feature through which peers could connect with each other. Since the main aim was to join forces and speak out, this feature was an excellent way for individual patients and caregivers to be heard.
Another well-praised feature was the scavenger hunt where patients, caregivers, family members, and patient representatives could participate. There were specific clues to locate the objects. Attendees had to find and click on all the objects that were hidden throughout the virtual platform before 4 pm CET. The winning prize was a €100 Amazon voucher!
According to Charlotte Wauters, the Coordinator of FIN, all their expectations were met by the vFairs team and they loved the user-friendly platform. She also said that this was one of the best virtual meetings they ever attended. Due to the global pandemic and limited travel options, they couldn’t rely on an in-person event. However, the supportive vFairs team made sure the event was accessible globally. That is why they are looking forward to hosting more virtual and hybrid events with vFairs in the future!
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