Resources for Superficial Siderosis Patients And Caregivers
Connect with a physician or neurosurgeon who has 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
Superficial Siderosis Facebook Group
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 grown to more than 650 patients, caregivers, medical professionals, and healthcare industry representatives.
The Silent Bleed Charity
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
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 Centeral is the Brazilian based Facebook group moderated by Renato Artur Nacimento. Contact Renato via email: renato-artur@hotmail.com