News

rideATAXIA Dallas Cycling Event Coming Up Nov. 6

This year’s rideATAXIA Dallas, a cycling event that raises money to support research into treatments for Friedreich’s ataxia, will take place Nov. 6. The event will feature in-person rides at UNT Discovery Park in Denton, Texas. Four route options are available: three, six, 27, and 50 miles. Registration…

Rare Disease Diversity Coalition Awards $600K to Combat Disparities

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…

‘Rare’ Documentary in Kickstarter Campaign to Raise $45K by Oct. 28

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.

Plans Progress for Approval of Omaveloxolone

Reata Pharmaceuticals is planning to ask the U.S. Food and Drug Administration (FDA) to approve omaveloxolone to treat people with Friedreich’s ataxia (FA) early in 2022, following the completion of a preliminary meeting with the agency. “Omaveloxolone could be the first drug approved for the treatment of Friedreich’s…

New Data-sharing Program Aims to Speed Innovation in Rare Diseases

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…

‘United Against Ataxia Hill Day’ Is Sept. 29

The third United Against Ataxia Hill Day will take place virtually Sept. 29, an event set aside to heighten awareness and support legislation that affects the ataxia community, including those with Friedreich’s ataxia (FA). All U.S. residents are invited to participate in the day-long advocacy event, which is a…