Rare Disease Day 2024

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 […]

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 […]

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. […]

Show Your Stripes

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 […]

In Loving Memory

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 […]

THE SUPERFICIAL SIDEROSIS PATIENT PERSPECTIVE

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.

Educate The World

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 […]