Resources for Superficial Siderosis Patients And Caregivers

Connect with a physician or neurosurgeon with other Superficial Siderosis patients, join an online support group for patients or caregivers, or search outside services for assistance opportunities. These links are located offsite.

• Outside Resource Organization Directory
• Superficial Siderosis Physician Directory
• National Organization for Rare Disorders (NORD)

Online Support Groups

SSRA Superficial Siderosis Support Facebook Group

The SSRA Superficial Siderosis Support group was formed as a safe space for superficial siderosis patients and their relatives to discuss/share information and concerns. The group is administrated by the Superficial Siderosis Research Alliance. *Please remember to always speak to your physician when starting new medications or treatments for superficial siderosis.

The Silent Bleed Charity

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

The Silent Bleed Charity Facebook Group

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

Friends of Superficial Siderosis Suffers Unite

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

Siderose Superficial Do Systema Nervoso Centeral

There is a fairly large population of superficial siderosis patients in South America. Siderose Superficial Do Systema Nervoso Central is the Brazilian-based Facebook group moderated by Renato Artur Nascimento. Contact Renato via email: renato-artur@hotmail.com