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 […]
The Superficial Siderosis Research Alliance is pleased to announce the appointment of Professor David Werring, FRCP Ph.D. FESO to the SSRA Medical and Scientific Advisory Board. Professor Werring brings a rich experience into research and clinical care of superficial siderosis patients. Professor Werring has published over 300 papers and contributed to several books. He is an editor of the forthcoming […]
Recently our Australian SSRA director Fiona stumbled upon an Instagram photo shared by another rare disease organization. It was a quote from a piece I had written over four years ago for the U.K based charity, The Silent Bleed. This was before Gary and I met Kyle, and an organization like the SSRA was an out-of-reach dream. When I went […]
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. […]
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 […]
Deciding to Start a Charity is a Tough Decision I remember when we heard our daughter had Superficial Siderosis several years ago, we did not know what to do or think. She had no symptoms, she had been in a car accident about four years prior and we had scheduled an MRI because another doctor noticed her tongue had some […]
