Mark Your Calendar!

The SSRA 2020 Fall Fundraiser It’s the perfect way to get a jump on your holiday gift-buying and support the foundation – The SSRA Online Silent Auction. This year’s auction will be available nationwide so everyone can get in on the action with a little friendly bidding.   From chocolate & wine baskets to pizza parties; autographed footballs to…

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My Giving Circle

Each year, Australian based MyGivingCircle awards $200,000 in Grants to grassroots charities, community groups, and not-for-profits.  It’s their way of giving back to the world community. The SSRA participated for the first time this quarter, and we are pleased to announce, with your support, we have been awarded one of the Top Ten Charity grants and an additional MyGivingCircle…

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SSRA Announces NORD Membership

NORD

The Superficial Siderosis Research Alliance (SSRA), a 501(c)(3) nonprofit organization dedicated to supporting Superficial Siderosis research, an ultra-rare disease affecting less than one in one million people worldwide, is pleased to announce they have been accepted for membership into the National Organization for Rare Disorders (NORD) at the platinum level. Platinum level Platinum level Membership represents the highest level…

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Rare Disease Week 2020

ssra

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…

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SSRA Awarded 2019 Bronze Seal of Transparency

SSRA GuideStar

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…

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Brain Tissue Donation Project

SSRA Brain Tissue 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 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…

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Natural History Study

SSRA 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)    

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