The longest-running superficial siderosis Facebook group, moderated by Joe Safieh and Matt Dvierin, evolved from the connections made in Dave Hill’s original superficial siderosis blog site. It began with fewer than 50 members and has now grown to more than 480 patients, caregivers, medical professionals, and healthcare industry representatives.
The Silent Bleed 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.
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.
This Facebook group, moderated by Janice Toovey and sponsored by The Silent Bleed, is 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 place to ask questions, find support and discuss the issues caregivers face.
There is a fairly large population of superficial siderosis patients in South America. Siderose Superficial Do Systema Nervoso Centeral is the Brazilian based Facebook group moderated by Renato Artur Nacimento. Contact Renato via email: firstname.lastname@example.org