Fabry International Network Seeks Entries for FIN Award 2022

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by Mary Chapman |

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The Fabry International Network (FIN) is calling for global submissions for its annual FIN Award, which recognizes the efforts of patient organizations to educate and unify the Fabry disease community and to heighten awareness of the rare genetic lysosomal storage disorder.

Projects must be initiated this year for the 2022 award, which grants recipients up to €2,500 (about $2,800). The deadline is Jan. 31.

The nonprofit FIN, based in the Netherlands, is an umbrella organization for the Fabry disease community that represents more than 54 countries and 62 patient organizations around the world.

“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,” FIN states on a webpage about the award.

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The application calls for contestants to describe the submitted project and detail how much it will likely cost, how many people will be involved, and what its objectives are.

The grant must be used exclusively for the awarded project and the program is not intended to endorse any product or service. FIN notes that will not share any personal or contact details with any third parties without consent, but the organization reserves the right to publish information about the winning project on its website, across its social media platforms, and in its quarterly newsletter.

Additionally, FIN may ask the grantee to present their project at its annual meeting.

“Each year, FIN awards a patient (association) led initiative that informs and educates the Fabry community and helps raise awareness with a grant,” FIN states in its submissions announcement. “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 and bringing patients together.”

The winner for last year was the Association Tunisienne des Maladies Lysosomales (ATLM), in Tunisia, which produced a documentary following Fabry patients. Its goal was to shine a light on the daily challenges of people with the disease in a way that those outside the Fabry community can understand, without being overwhelmed by scientific details.

“Seeing peers and caregivers or parents living their lives instead of only hearing about symptoms helps people to connect better,” the announcement states.

Fabry chiefly affects the heart, nervous system, and kidneys, often leading to life-threatening complications. Although the disorder occurs in both sexes, males are more affected than females, who may be asymptomatic their whole lives.