Superficial Siderosis Presentation
2019 Believe in Hope Superficial Siderosis Presentation Presented by Michael Levy, MD, Ph.D. Associate Professor, Department of Neurology Harvard Medical School Massachusetts General Hospital
Rare Disease Week 2020
Rare disease legislative advocacy is an important step to ensure the voice of the superficial siderosis community is heard. Rare disease week on Capitol Hill allows patients, caregivers, advocates, and rare disease patient advocacy organizations an opportunity to discuss the issues face-to-face with Members of Congress and their staff. To receive first-hand knowledge on federal legislative issues, meet with other […]
SSRA Awarded 2019 Bronze Seal of Transparency
The Superficial Siderosis Research Alliance was recently awarded a 2019 Bronze Seal of Transparency by GuideStar. Our up-to-date Nonprofit Profile on GuideStar guarantees the SSRA is committed to open and transparent sharing of our fundraising activities, projects, and financial information. Now our community members, as well as 10+ million GuideStar users, can find out more about our mission and programs. […]
Brain Tissue Donation Project
WHAT IF RESEARCHERS COULD IDENTIFY A WAY TO GIVE YOUR BODY A FIGHTING CHANCE? Research takes a very long time, so as hard as it may be to face, even though some of our SS community friends will never experience the benefits, you still have an opportunity to contribute. To make a difference to those who follow with a real […]
Natural History Study
Natural History Study Of Superficial Siderosis Knowledge of natural history is essential for developing more efficient clinical trial designs. It also could help reduce the length and cost of drug development and, possibly, contribute toward greater predictability of clinical development programs. -Janet Woodcock, M.D., Director of FDA’s Center for Drug Evaluation and Research (CDER)
