Superficial Siderosis Research Alliance Mission

To seek, raise and provide funding in support of medical research for the benefit of the world community affected by the neurodegenerative disorder superficial siderosis.
WHY AND HOW THE SSRA WAS FOUNDED

WHY AND HOW THE SSRA WAS FOUNDED

There is no greater force than the sense of urgency you experience when someone is diagnosed with Superficial Siderosis. This ultra-rare neurodegenerative disorder affects less than one in three million persons worldwide.

ABOUT US
LEND YOUR VOICE SPREAD AWARENESS

LEND YOUR VOICE SPREAD AWARENESS

Request your free Superficial Siderosis awareness wristband today. You may request up to ten 1/2" debossed silicone wristbands. Shipped from points in the United States, United Kingdom, and Austraila while supplies last.

YES PLEASE
CAN WE ACHIEVE OUR GOAL?

CAN WE ACHIEVE OUR GOAL?

How does a small patient community move forward? Continue to visit multiple specialists in an effort to survive the effects of this disorder? Or do we tackle this problem head-on, together as a community, to empower research?

WHY DONATE?
CLINIC AND RESEARCH LAB

CLINIC AND RESEARCH LAB

The SSRA raises and distributes research funding to the newly founded Superficial Siderosis Clinic and Research Laboratory. Located at Mass General Hospital, Boston, patients may consult the clinic from anywhere in the U.S.

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GIVING TUESDAY

91% funded
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Donation Total: $25.00

At a time when we are all experiencing obstacles, generosity is what brings people together. Generosity gives everyone the power to make a positive change in others’ lives and is a fundamental value everyone can act on. There is still time to help with our #GivingTuesday2020 campaign.

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ADVOCACY

  • Rare Disease Week 2021 on Capitol Hill
  • Contact Your Federal Policymakers
  • Superficial Siderosis Advocacy Guide
  • Contact Your Local News Media
  • Proposed Superficial Siderosis Veterans Legislation Campaign

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.

SSRA SOCIAL MEDIA

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Our Volunteers

Captain of the Month

Mike Hanamann

auction_cocairs
Auction Co-chairs Deb Zindler and Sue Dempsy
president and treasurer
Kyle Dempsey and Lloyd Gleisner

Together for a Cure

Grant Funding

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Donation Total: $100.00

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WHAT DEFINES A RARE DISORDER?

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people in the US. There are over 7,000 identified rare diseases and disorders.Superficial Siderosis is classified as an ultra-rare disorder with less than 300 cases identified in the U.S. and a yet to be determined number worldwide.
SUPERFICIAL SIDEROSIS RESEARCH ALLIANCE© 2020 - All rights reserved Federal Tax ID: 84-2515094
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