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The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…
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A crowdfunding campaign aims to raise $45,000 to support “Rare,” a documentary film featuring the struggles and achievements of people living with rare diseases and their families. Sweis Entertainment and Digital Cave Media launched the campaign — allowing filmmakers to finish producing and to release the documentary — on Kickstarter.
A new U.S. initiative called Rare Disease Cures Accelerator–Data and Analytics Platform — dubbed RDCA–DAP — aims to accelerate treatment innovation across rare diseases by sharing existing patient data and promoting the standardization of new data collection. Launched during a virtual workshop in September, the U.S. Food and Drug…
An eight-week, online mindfulness series for people with Fabry disease — aimed at relieving pain, reducing stress, and improving overall well-being — will open Sept. 29 and is currently enrolling participants. The Zoom series, which runs through Nov. 24, is presented by the MPS Society, which provides…
Columnist Jerry Walter has significant hearing loss due to Fabry disease. Here’s how he’s adapted over the years.
Check out Fabry Disease News’ collection of Health Insights, where you can find a variety of information for patients and caregivers.
Find more answers to your questions about Fabry disease in our FAQs section.
Becoming educated and informed about Fabry disease is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your Fabry disease journey.
There is no cure for Fabry disease yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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