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Patient Support

SSRA

The Superficial Siderosis Research Alliance provides support for the patient registry, funds research grants, sponsors research projects, advocates for patients, and helps educate the public through donations and fundraising events. The SSRA is a registered 501(c)(3) nonprofit organization. All U.S donations are tax-deductible.

About Us

Livingwithss.com

The livingwithss.com website is the informational hub of the Superficial Siderosis Research Alliance. We provide access to information for patients, caregivers, and those interested in learning about superficial siderosis. Our newsletter, physician directory, research depository, and symptom glossary are open access.

Learn More

Silent Bleed Charity

The Silent Bleed Charity was founded by Jason Roberts, a Superficial Siderosis sufferer who needed help. With the assistance of friends, he turned the spark of an idea into reality. This UK registered charity focuses on fundraising activities, and if you’re struggling to find relevant patient information, then you’ve come to the right place.

Visit

SS Chat Group

The longest-running private Superficial Siderosis Facebook Group, moderated by Joe Safieh and Matt Dvierin, evolved from the connections made on the original SS blog site, authored by Dave Hill. It began with fewer than 50 members and has grown to more than 400 patients, caregivers, medical professionals, and healthcare industry representatives.

Join

Silent Bleed

The Silent Bleed Charity Facebook group, moderated by Jason Roberts, founder of The Silent Bleed Superficial Siderosis Charity, is a private group where members can discuss fundraising ideas, share news, ask questions, and discuss the roadblocks of U.K life with Superficial Siderosis. Growing by leaps and bounds, it now counts more than 300 members.

Apply

Caregivers Only

Moderated by Janice Toovey and sponsored by The Silent Bleed, was created for the caregivers, friends, and family of Superficial Siderosis patients. Janice is the mother and caregiver of Superficial Siderosis patient Paul Toovey. This group is closed to patients; it’s a private group to ask questions, find support and discuss the issues caregivers face

Chat