Superficial Siderosis Awareness Month is Here September has arrived, and the SSRA regional directors are working overtime on our Superficial Siderosis Awareness month campaign. As a result, the education articles are hitting inboxes, our social media feeds are humming, and our advocates are stepping up to spread the word about Superficial Siderosis. One look at the efforts of our Rocky […]
Rare Disease Legislative Advocacy In A Virtual World Every year representatives from rare disease organizations from across the country travel to Washington DC. We advocate for legislative issues of importance to the rare disease community by sharing with our legislators and Congressional staff how healthcare policies impact our rare journeys. This annual event also provides a unique opportunity to meet […]
Removing Regulatory Roadblocks There are over 7,000 identified rare diseases and disorders in the world. While Superficial Siderosis may impact a small number of people, the Everylife Foundation believes a cumulative 30 million Americans are living with all these conditions. 93% to 95% have no FDA-approved treatments. While there are many reasons, research and regulatory challenges remain high on the […]
It’s A Virtual World It’s lobby day for your SSRA advocates! Rori Daniel will be representing the Superficial Siderosis Research Alliance and our SS community during this two-day virtual event. On Wednesday, March 3rd, the SSRA will meet with Senator Ted Cruz and Senator John Cornyn’s offices. On Thursday, March 4th Rori will meet with Representative Pat Fallon and Representative […]
Rare disease legislative advocacy is an important step to ensure the voice of the superficial siderosis community is heard. Rare disease week on Capitol Hill allows patients, caregivers, advocates, and rare disease patient advocacy organizations an opportunity to discuss the issues face-to-face with Members of Congress and their staff. To receive first-hand knowledge on federal legislative issues, meet with other […]
