COVID-19 Vaccine
SSRA Medical Advisory for Superficial Siderosis Patients
December 10, 2020
Giving Tax Strategies
On The Horizon
2021 will see the launch of our first SSRA sponsored research study designed to explore the possibility that boosting brain urate by treatment with an antioxidant could slow the brain cell degeneration of Superficial Siderosis patients. This project might substantially shorten the time needed to develop a full neuroprotection trial. Optimizing this first study’s crucial characteristics should considerably enhance the likelihood of future therapies.
ADVOCACY
- Rare Disease Week 2021 on Capitol Hill
- Your Federal Policymakers
- Superficial Siderosis Advocacy Guide
- Your Local News Media
- Proposed 2021 Superficial Siderosis Veterans Letter Campaign (details soon)
SOCIAL MEDIA
ANNOUCEMENTS
- Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Our Coder Search Begins
Measuring The Iron When a Two-year observational study on the efficacy of deferiprone1 was released, one finding stood out. Physicians…
Banding Our World Together
Sharing The SSRA Mission
Our Volunteers
Captain of the Month
Mike Hanamann
