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. […]
Rare Disease Day 2023 This February 28th is a significant opportunity to raise awareness for the millions of people worldwide who are impacted by rare diseases. By learning about these conditions, showing our support, and advocating for research and funding, we can all work together to create a brighter future for the rare disease community. This year’s theme for Rare […]
With a heavy heart, we share the news of the unexpected passing of Marybeth Sullivan, the Superficial Siderosis Research Alliance Regional Director for the New York area. Marybeth was a fiery and bright individual known for her dedication and loyalty to her volunteer work with the Superficial Siderosis Research Alliance. Marybeth’s first-hand experience with superficial siderosis, which she was diagnosed […]
Our primary focus for 2023 remains increasing enrollment worldwide by identifying SS patients through clinical care referrals, social media outreach, and Superficial Siderosis Research Alliance patient community advocacy. Evaluation of patterns in real-world clinical practice and self-reported patient experiences contribute to advancing the understanding of superficial siderosis, management practices, quality-of-life, and improving long-term health outcomes.
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 […]
Summer Update 2022 Unbelievably we’re about to begin the second half of 2022 already. If you had a chance to look through our 2021 Annual Report, you might be familiar with the SSRA plans for this year. So it seems the perfect time to let everyone know about our progress with a summer update on what’s happening behind the scenes. […]
The Superficial Siderosis Research Alliance is pleased to announce the appointment of Natallia Kharytaniuk MB BCH MRCS(ENT) MRCS(I) MCH, a clinical doctoral research fellow at the Ear Institute, University College London, UK, to the SSRA Medical and Scientific Advisory Board. Dr. Kharytaniuk’s background is clinical; obtaining her medical degree with second-class honors at the National University of Ireland, Galway. She […]
Our Progress The Superficial Siderosis Research Alliance was organized during the summer of 2019 and began operations in early October. Our initial fundraising effort began in earnest in November, and we ended 2019 much further than we imagined. We began expanding our educational, organization, and patient registry websites in 2020 to provide a permanent 24/7 resource to our community. In […]
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 […]
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. […]
