Patient Support


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.


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.


Caregivers Only

Moderated by Janice Toovey and sponsored by The Silent Bleed, it was created 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 group to ask questions, find support and discuss the issues caregivers face