Rare Disease Day is the last day of February each year and raises awareness for rare diseases to improve access to treatments and medical representation for individuals and families touched by rare disease. The 9th annual Rare Disease Day will be is celebrated on Monday, February 29, 2016 — the rarest day of the year! Various awareness, empowerment and fundraising activities take place in the United States with the common goal of empowering advocates to become rare disease activists.
So what’s a Rare Disease anyway?
A disease or disorder is defined as rare in the US when it affects fewer than 200,000 Americans at any given time. You may be familiar with some rare diseases and not ever realized how rare they are! Various television shows and movies have brought awareness to such diseases as: Huntington’s Disease, ALS /Lou Gehrig’s Disease (remember the ice bucket challenge?), certain types of Muscular Dystrophy, Cystic Fibrosis, and Narcolepsy…to name a few!
Did you know?
- Rare disease affects more people than AIDS and cancer combined.
- There are approximately 7,000 different types of rare diseases and disorders, with more being discovered every day.
- 30 million people in the United States are living with rare diseases. That’s 1 in 10 Americans or 10% of the U.S. population.
- Rare diseases are responsible for 35% of deaths in the first year of life, and 50% of all affected are children.
- 95% of rare diseases DO NOT have a single FDA approved drug treatment.
What can we do?
- Become an advocate and help spread the word.
- Use hashtags #WRDD2016 & #RareDiseaseDay on social media channels.
- Participate in a Rare Disease Day event.
- Donate to a rare disease organization like National Organization for Rare Diseases, Everylife Foundation, Uplifting Athletes, or Rare Disease Foundation
Do you or someone you know suffer from a rare disease?
For information & resources, help with access to medications and to take action, please visit the National Organization for Rare Diseases.
*Sources – Everyday HEALTH, Rare Genomics Institute, EveryLife Foundation, National Organization for Rare Diseases