Rare Disease Day 2016 was bigger and better than ever. Here are some highlights.
Rare Disease Day® 2016 was a Smashing Success!
Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day®. This is the one day that everyone comes together globally to bring attention to all 7,000 rare diseases that combined affect 30 million Americans--or 1 in 10 of us--and millions more around the world.
NORD is proud to be the U.S. sponsor of Rare Disease Day to help raise awareness and spread the word about rare diseases.
Without partners and supporters like you, Rare Disease Day would not be this successful. Thank you for your support, thank you for helping us heighten awareness, and hopefully every Rare Disease Day will lead us toward more cures. Thank you all for your support.
Peter L. Saltonstall
President & CEO
National Organization for Rare Disorders
DON'T MISS OUT! Come hear the very latest about what is known about and what hope we have for a cure for HSP and PLS. Also, you will love meeting and learning from over one hundred other people with these conditions. Make friends, learn from others about how to cope, the best tools and just have a great time.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors, CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.