This Rare Disease Day, February 28th, NORD is kicking off a yearlong campaign to bring awareness to rare diseases. Through the voices of many living with a rare disease, we aim to inspire and encourage those living outside of the community to get involved in ways big or small. We’re hoping you can help us by participating in the first-ever community-driven public service announcement (PSA) for rare diseases.
What do we need?
For member organizations: Please share this email with members of your community who might be interested in submitting a video. We are hoping to enlist as many participants as possible and we have less than 2 weeks to do this. Please only share this email privately to your members and not on social media. We need to keep this confidential until Rare Disease Day!
For individuals and caregivers living with a rare disease: We need you to film yourself. (Don’t worry, this will be fun!) As a member of the rare disease community, your voice is so important—to the people you love, to those who love you, to the people who live with the same disease as you, and to those who live with a different disease. And to those who don’t yet know you or your story, but will.
We have created a secure website to capture all of this content: TheNORDProject.com.
Once someone uploads their submission, our editors will do their magic, putting together a PSA that will go live on Rare Disease Day. It will be the start of a wonderful, yearlong effort to bring awareness to the community you are a part of every day.
When do we need this by?
Quickly. (Sorry!). We need all submissions in by February 8, 2017.
Thank you on behalf of NORD and the larger rare disease community. We hope you are as excited as we are about this project, and please keep your participation a secret until this hits the public on February 28th!
I'm ready to share my story at TheNORDproject.com!
Please don't hesitate to contact me if you have any questions about this exciting opportunity!
Visit our website: Rarediseases.org
In 2015 almost a dozen HSP Patient Advocacy Organizations from all over the world met in Madrid Spain to join forces to establish an international connection and resource to make sure a first rate, well established and impeccable HSP Patient Registry is set up. This will allow our next Clinical Trials to go forward smoothly and effectively. Good communication channels have also been established so as to allow for a smooth flow of information among scientists and organizations such as The Spastic Paraplegia Foundation.
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.