Did you know? Rare diseases are not so rare: there are 7,000 rare diseases & disorders that combined affect 30 million Americans–1 in 10 of us–and more than half are children.
People with rare diseases have tremendous unmet needs, including misdiagnosis, a long time to finally receive a correct diagnosis, and when they do, 95% have no treatment with ZERO CURES.
Rare Disease Day® takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives. You can make a difference: sign up to receive news and updates, start planning your event, and share feedback and ideas for next year.
The global theme for Rare Disease Day 2018 is research. Research brings hope to people living with rare diseases and with your support by getting involved, you can help make a difference in rare disease research.
Learn more about the global theme and frequent this website often to learn of ways to get involved in the U.S.
- Today, Pennsylvania advocates came together at the state capitol for a #RareAction Network #RareDiseaseDay Advocacy… https://t.co/DTfIupmGQ1
- Today, Pennsylvania advocates came together at the state capitol for a #RareAction Network #RareDiseaseDay Advocacy… https://t.co/50cly51h6C
- RT @RareAction: Successful #RareDiseaseDay in New Hampshire! #RareAction #TogetherWeAreStrong https://t.co/ZBQXtG1qeC
- RT @RareAction: "I would really, really love to see this bill passed because it would potentially help people who have rare diseases and ar…