FIN celebrating Fabry doctors during awareness month
Fabry International Network honoring 'pioneers of care' worldwide
For Fabry Awareness Month this April, the Fabry International Network, or FIN — an alliance of 61 patient organizations in 57 countries — is shining a spotlight on doctors who have focused on caring for people with the rare inherited disease, helping patients better understand the disorder, get accurate diagnoses, and access treatments.
FIN has created a webpage highlighting the work of more than a dozen doctors worldwide who care for people with Fabry disease.
“These Fabry heroes have played a critical role in shaping the lives of countless patients and families, offering not just expertise but also compassion and hope,” FIN stated on its website. “Through their dedication, they’ve helped build bridges between science and humanity, proving that the connection between patients and doctors is vital in navigating the Fabry journey.”
The Fabry Heroes project is just one of the many initiatives marking Fabry Awareness Month, in which the community is aiming to educate others while generating support for people affected by the disease, and funding for research and care.
This month will feature the Annual Virtual Fabry Awareness Walk
Also getting into action this awareness month is the Fabry Support & Information Group, which is hosting its Annual Virtual Fabry Awareness Walk throughout April. This yearly project aims to raise funds to support Fabry Assist, a program that offers financial aid for people affected by Fabry disease in the U.S. This initiative helps individuals pay for things like transportation, testing, and medical costs.
Donations can be made online. This year’s walk has a goal of raising $15,000.
“This nonathletic, noncompetitive event has helped to raise awareness, honor the families affected by Fabry disease, and also remember those we have lost,” the event webpage states. Community members can also connect with the Support & Information Group on Facebook.
As part of its Heroes campaign, FIN is calling on the Fabry community to share their stories of outstanding medical professionals on social media using the hashtags #FabryAwarenessMonth and #FabryHeroes. Members of the Fabry community can find FIN on Facebook and Instagram to help get involved and spread the word
Fabry disease is a rare genetic condition that can cause symptoms such as kidney damage, skin problems, heart disease, nervous system issues, digestive complications, and severe pain. The disorder is caused by mutations in the GLA gene, which lead certain fatty molecules to build up to toxic levels in cells and ultimately cause damage. Fabry can affect people of all sexes, but it tends to be more severe in males — it’s estimated that there are nearly 4,000 boys and men with Fabry disease in the U.S. alone.
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