A Comprehensive Resource for Providers Treating Superficial Siderosis
Announcing the New “Medical Professional” Section, a Resource for Providers We are thrilled to announce the launch of a dedicated “Medical Professional” section on our SSRA website (Superficial Siderosis Research Alliance). This new section aims to serve as a comprehensive resource for providers treating superficial siderosis (SS), a rare neurological disorder. Healthcare providers often navigate uncharted waters when treating patients […]
Power of Community: Celebrating Superficial Siderosis Awareness Month with Dr. Michael Levy
September is Superficial Siderosis Awareness Month In keeping with this year’s Superficial Siderosis Awareness Month theme, “Power of Community: Our connection is our strength,” join us as we dive deep into the world of superficial siderosis through an enlightening conversation with Michael Levy, MD, Ph.D. As many in our community know, while Dr. Levy is the Chief Medical and Research […]
The Power of Community: Superficial Siderosis Awareness Month 2023:
Our Connection Is Our Strength September is almost upon us again, and with it comes the annual Superficial Siderosis Awareness Month. This year, we are embracing a theme that resonates deeply with every community member: “Power of Community: Our Connection is our Strength” #teamsuperficialsiderosis. The journey with Superficial Siderosis (SS) is one that no one should walk alone. It’s a […]
4 Superficial Siderosis Research Committee Summer Meeting Highlights
The Superficial Siderosis Research Committee, comprising superficial siderosis experts and patient representatives, recently convened for their summer meeting on June 23, 2023. Multi-National Deferiprone Double-Blind Clinical Trial One of the primary focuses of the meeting was the ongoing planning of a multi-national, double-blind clinical trial using deferiprone, a chelating agent aimed at removing excess iron from the body. Committee Chair […]
Advocacy: Why We Do It and the Benefits You Receive
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 […]
Highlights from the Superficial Siderosis Research Alliance Annual Board Meeting
It was very productive during the recent Superficial Siderosis Research Alliance (SSRA) annual board of directors meeting. We’re thrilled to share the outcomes and key decisions. These choices reflect our continued commitment to advancing medical research on Superficial Siderosis and bringing hope to those affected by this condition. Announcing Officers A key part of our meeting was the election of […]
Superficial Siderosis Research Alliance Completes $100,000 Research Pledge to Massachusetts General Hospital
Our Research Pledge The Superficial Siderosis Research Alliance (SSRA) proudly announces that we have fulfilled our $100,000 research pledge to the Superficial Siderosis Clinic and Research Laboratory at Massachusetts General Hospital, led by Dr. Michael Levy. This is a significant milestone for us, and we are thrilled to have been able to support such an important cause. Dr. Michael Levy […]
Superficial Siderosis Advocate of the Year
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. […]
