NORD is offering a press kit with resources to help you reach out to your local media or share your story online. Sharing experiences helps people understand what it is like to live with a rare disease. You can play an important role in this global awareness campaign by contacting TV, radio, newspaper or online reporters or bloggers with information about Rare Disease Day and your particular story. NORD has created the following resources; please feel free to use them and to share them with others.
Rare Disease Day Press Kit:
- Rare Disease Day 2013 Press Kit: News Release
- Rare Disease Day 2013 Press Kit: Letter to the Editor
- Rare Disease Day 2013 Press Kit: Logo
- Rare Disease Day 2013 Press Kit: FAQ
- Rare Disease Day 2013 Press Kit: 30th Anniversary Fact Sheet
- Rare Disease Day 2013 Press Kit: Orphan Drug Act
- Rare Disease Day 2013 Press Kit: Federal Resources
- Rare Disease Day 2013 Press Kit: Flier-Rare Diseases
- Rare Disease Day 2013 Press Kit: Flier-Rare Disease Day
- Rare Disease Day 2013 International Posters and Downloads
Media Stories from 2013
Here are some of the media stories from Rare Disease Day 2013:
- CBS News featured Images from the Handprints Across America Gallery, an In Depth Rare Disease Day Segment, and an article
- The Today Show: Featured the CDKL5 Moms
- Good Morning America: Robin Roberts Mentions Rare Disease Day
- ABC News: Girl With Rare Disease, Cystinosis, Can’t Sweat
- ABC News: Living with Epidermolysis Bullosa: Rare But Not Alone
- CNN iReport: Featured NORD’s Rare Disease Day Video
- Boston Business Journal: It’s Rare Disease Day- 10 Mass. Biotechs working on treatments
- The Huffington Post: At 54, Cindy Abbott Runs the Iditarod to Raise Awareness of Her Rare Disease
- The Huffington Post: CPS Sufferers Not Alone
- Yahoo! Voices: Remembering Worldwide Rare Disease Day
- Check Orphan: NPS Pharmaceuticals Observes Rare Disease Day 2013 and Celebrates 30th Anniversary of National Organization for Rare Disorders
- News 8 in Connecticut: Rare disease day at the Capitol
- Mass Bio Newsletter: Q & A With Mary Dunkle
Share Your Story
NORD collects compelling stories because we receive many media inquiries. If you would like to submit your story, we may use it, for Rare Disease Day, press releases, on our Blog, on our website or in interviews with the media.