Today marks the beginning of our Spotlight on Superficial Siderosis Week, a special time to raise awareness, share valuable resources, and shine a light on this rare neurodegenerative disorder. We at the Superficial Siderosis Research Alliance (SSRA) are thrilled to kick off this week by announcing an exciting development many of you have eagerly awaited! We are proud to share […]
Empowering Voices: Advocacy and Awareness on Rare Disease Day Rare Disease Day is a powerful platform for advocacy and awareness, empowering the voices of those living with conditions like Superficial Siderosis. By sharing stories, fostering community connections, and advocating for policy changes, the rare disease community can effect meaningful progress in the fight against SS and other rare conditions. The […]
Part One of a Three-Part Series This is a must-read if you are interested in advocacy, specifically working with the SSRA. Rori Daniel (our Executive Director) and I met several years ago at a 2019 rare disease advocacy event in Washington, D.C. Rori was with a friend, her daughter, and Gary, her husband, who has superficial siderosis. I traveled to […]
Dear Superficial Siderosis Research Alliance members, We are thrilled to announce that Rhys Holmes has been named the Superficial Siderosis Advocate of the Year for his outstanding contributions to our organization and the rare disease community. As the Director of SSRA UK, Rhys has demonstrated unparalleled dedication to advancing our mission of raising awareness and funding for superficial siderosis research. […]
September is Superficial Siderosis Month Our annual awareness campaign is a powerful way to raise public interest in the SSRA’s mission and educate all our communities on the nature of superficial siderosis. By setting aside one month a year, we can attract a vast worldwide audience by shining a spotlight on the medical issues our SS family members face. Our […]
Earlier this year, the Castleman Disease Collaborative Network reached out to the SSRA with a request to participate in a project meant to develop a well thought out plan rare disease organizations could implement to resolve the roadblocks patient organizations face in trying to gain approval for repurposing of drugs currently on the market for therapeutic use in unrelated conditions. […]
Game Train USA Driving December SS Awareness Game Train USA believes by championing local nonprofits and the causes they support is how they can give back to the community in a very big way. We’re proud to announce the Rocky Mountain Superficial Siderosis Research Alliance has been chosen as their featured charity for the month of December. We would like […]
The Superficial Siderosis Research Alliance is pleased to announce its membership application to EURORDIS, a federation of patient organizations and people active in rare diseases was recently accepted by the EURODIS Board of Directors. By becoming a member of EURORDIS, The SSRA reaffirms its commitment to provide research support to all superficial siderosis patients, no matter where they may currently reside. Due […]
Sharing Our Rare Disorder Journey As part of our awareness campaign this September, our SS community members from around the world joined together to create a footprint in the world of digital awareness. This short video is available for viewing on several social media platforms and offers a unique window into the superficial siderosis patient rare disorder journey. When you […]
Round Up For Research To spread awareness during September Superficial Siderosis month, Caffe’ Crema owners Tanya and Greg Beers have added a “ROUND-UP FOR RESEARCH” option to their online ordering app and in-store sales. Customers will be given an option of rounding up their purchase to the nearest whole dollar for donation to the SSRA. They also can bump their […]
