World RARE Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families.
This 10th annual RARE Disease Day is slated for Tuesday, February 28, 2017.
CARES hopes that you will do your part to help raise awareness of rare diseases like Congenital Adrenal Hyperplasia (CAH). There are many ways to get involved: host an event, use social media to spread the word to all family, friends and colleagues, partner with rare disease organizations on both the local and international level, share your story about living with a rare disease and be a part of this amazing and inspiring day of awareness.
“The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.The campaign targets primarily the general public and decision-makers about rare diseases and their impact on patients’ lives.The campaign targets primarily the general public and also seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.” RARE DISEASE DAY® 2017 website.
FOR MORE EVENTS, IDEAS AND RESOURCES:
Global Genes®, one of the leading rare disease patient advocacy organizations in the world, is encouraging individuals and groups to participate in this world wide event as well. Visit their website for great ideas on how to get involved and to order their signature Blue Denim Genes ribbons to wear on February 28th.
National Institutes of Health (NIH) – a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency — making important discoveries that improve health and save lives.
National Organization for Rare Disorders (NORD) – is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them and is the official Rare Disease Day US sponsor. NORD, along with its more than 250 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. To view the official U.S. Rare Disease Day video and for more ways to get involved visit http://rarediseaseday.us/