Alone we are rare. Together we are strong.
Today is Rare Disease Day
Make Your Voice Heard
Today is the day that people living with rare diseases speak with a single voice, all around the world.
There have been weeks or months of preparation in many countries. Now, the day is here and it’s the time for all of us to take a stand on behalf of all patients and families affected by rare diseases.
Rare Disease Day has special significance in the U.S. this year because it’s the 30th anniversary of the Orphan Drug Act and the establishment of NORD.
In addition, federal budget cuts are slated to go into effect tomorrow that could significantly affect medical research at the National Institutes of Health (NIH) and the Rare Disease Program at the Food and Drug Administration (FDA).
Please take a few minutes to read the letter posted by NORD and either submit it as it is to your elected officials or personalize it with your own information.
Last year, more than 16,000 letters were submitted during the 24-hour Handprints on the Hill campaign for Rare Disease Day. All states were represented. This year, we hope to have even more letters submitted … especially with these looming budget cuts.
Thank you for supporting the Handprints on the Hill campaign and for making your voice heard.
Ariana-Leilani suffers from the rare disease of Severe Chronic Neutropenia.
- Rare Disease Day – I have EDS (thechattymomma.com)
- Rare Disease Day puts spotlight on 30 million Americans (cbsnews.com)
- Rare Disease Day: Handprints across America (cbsnews.com)
- Two BCM researchers recognized on Rare Disease Day (momentumblog.bcm.edu)
- Rare Disease Day (braxtonjoseph.com)
- It’s Rare Disease Day – 10 Mass. biotechs working on treatments (slide show) (bizjournals.com)
- Rare Disease Day Spotlight (iamareader.com)
- Rare Disease Day 2013 (ireport.cnn.com)