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!
Sincerely,
Kristen Angell
NORD
Membership Manager
Visit our website: Rarediseases.org
