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Superficial Siderosis Research Alliance

OUR VISION is a future where a Superficial Siderosis diagnosis is no longer a life-altering condition.

OUR MISSION is education, advocacy, seeking, and providing funding support for all superficial siderosis medical research for the benefit of every person affected by this ultra-rare neurodegenerative disorder.

Empowering Research

Take support to the next level.

We’re proud to have allocated $100,000 to the Superficial Siderosis Clinic and Laboratory at Massachusetts General Hospital, thanks to the generous contributions from our corporate partners and individual benefactors. Our research committee, a diverse group of top-tier researchers, patients, caregivers, and advocates, ensures a holistic approach to study design. We harness the power of social media to reach individual donors and collaborate with volunteer-sponsored local events, such as 5 K fun runs, trail runs, silent auctions, and t-shirt sales. Join us in our mission to make a difference.

Research Infrastructure

Support special exhibitions.

The SSRA plays a crucial role in promoting the development of the SS research infrastructure. We funded the creation and administration of the global Superficial Siderosis Patient Registry. As a research sponsor, we also shape targeted clinical research protocols, budgets, and project administration. Livingwithss.com is a digital magazine that keeps you informed and connected. We strive to bring you the latest medical updates, stories from our community, and a platform to connect with those who truly understand your journey. Dive in and discover a world of knowledge and support.

Education, Advocacy, Outreach 

Enrich our growing community.

Our mission at the SSRA is to champion the patient community. We employ practical strategies to raise awareness of superficial siderosis within the medical community and the broader public. Our US, Canada, UK, and Australian volunteers leverage SSRA-approved print materials, grassroots outreach, social media, and educational websites to inform and engage. We are a 100% volunteer organization run by patients, caregivers, and friends. Our commitment to transparency, patient privacy, and sharing the most up-to-date, approved medical information distinguishes us.

  • Understanding

    Imagine your brain is like a city, with different areas responsible for specific tasks. Now, imagine if toxic dust (in this case, iron particles) started to settle over the city, disrupting its normal functioning. That’s what happens in Superficial Siderosis.

  • Patient Info

    Understanding which type of superficial siderosis you have is vital for doctors. Surgery might help slow progression in iSS type 1, but it can’t undo existing damage. Superficial siderosis is a complex and often misunderstood condition. Its three types have different causes and symptoms. Knowing more about it can help in diagnosis and treatment, making life easier for those affected.

  • Living With SS

    The SSRA digital magazine for superficial siderosis patients, caregivers, family, and friends.

  • Community

    Connect with other people who are living with a superficial siderosis diagnosis. Ask questions in the group and receive real time advice on their experiences.

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