Living with Superficial Siderosis will be heading to Capitol Hill in Washington DC this weekend to join with fellow rare disease advocates, patients, and caregivers from across the country. Representatives from all fifty states will gather to share experiences, tell their stories and discuss with our legislatures how important we as a community count on their much-needed support for an increase in the annual discretionary funding for the National Institutes of Health (NIH) and support an increase in funding for the Food and Drug Administration (FDA) in the Fiscal Year 2020. Monday, February 25th, we will spend the day learning how to effectively meet with legislatures, practice strategies with our advocate group members, and prepare to make the most of our day on Capitol Hill. Tuesday we head to the hill to spend the day meeting with multiple Members of Congress and their staff with our plan to lobby for
Visit the Superficial Siderosis Pateint Registry. Open to patients, caregivers, and researchers worldwide. This registry offers you a chance to participate in research surveys and trial announcements.
Visit the official SSRA Gear store. The proceeds of every purchase helps fund the Superficial Siderosis Research Alliance research grant, education, and awareness programs.
Hearing Impaired 5PK
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BLOG: Superficial Siderosis Research Alliance
SUPERFICIAL SIDEROSIS RESEARCH ALLIANCE