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 […]

SSRA Admin Research Projects 0 2 min read

June 14, 2023

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 […]

Kyle Dempsey advocacy 0 4 min read

June 9, 2023

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 […]

SSRA Admin News 0 3 min read

March 28, 2023

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 […]

SSRA Admin News 0 4 min read

February 28, 2023

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. […]

SSRA Admin advocacy 0 52 sec read

February 26, 2023

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 […]

SSRA Admin advocacy 0 2 min read

February 13, 2023

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 […]

SSRA Admin blog 0 1 min read

January 13, 2023

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.

SSRA Admin Research Projects 0 8 min read

September 4, 2022

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 […]

SSRA Admin advocacy 0 1 min read

September Spotlight on Superficial Siderosis

The 3rd Annual Trail Grinder Run!

Rare Disease Day 2024

A Rare Disease Advocate’s Triumphant Dash Through a Medical Maze

Superficial Siderosis and the Ferroptosis Frontier

Volunteer Spotlight: Jack Posewitz