Welcome to the Superficial Siderosis Discussion Boards
While the popularity of social media has shown us a way to connect globally with those diagnosed with superficial siderosis, you might be surprised how many SS patients do not have a Facebook account or any social media. The Superficial Siderosis Community Forum is an online social network created by the SSRA with the singular goal of connecting patients, caregivers, and families affected by superficial siderosis.
Providing Safe and Private Spaces
The forum is organized into specific discussion areas in which patients and families may share experiences on their symptoms, quality of life, and clinical care. In addition, the platform features communication tools like an open forum for questions concerning our community at large and private discussion areas for the discussion of sensitive topics.
Discussion Board Topics that Matter
All members are welcome to create a topic-specific board. Our launch includes a pre-made area for patients with superficial siderosis and Marfan’s syndrome, a space for the unique problems faced by male patients, and another room for female patients.
Create a Unique Superficial Siderosis Community
All members may upload a profile picture and profile background, write a short biography, and connect with other people by creating a friends list. In addition, you may start a private chat between friends, group chat, or send private messages. All boards have an assigned SSRA moderator, but we hope the community will evolve into a self-governing community.
Registration is now open on the Superficial Siderosis Research Alliance website.