Rare Disease Day
| Rare Disease Day | |
|---|---|
 |
|
| Observances | Awareness of rare diseases |
| Date | Last day of February |
| 2016 date | February 29 |
| 2017 date | February 28 |
| 2018 date | February 28 |
| Frequency | Annual |
Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. It was established in 2008 because, according to European Organisation for Rare Diseases (EURORDIS), treatment for many rare diseases is insufficient, as are the social networks to support individuals with rare diseases and their families; furthermore, while there were already numerous days dedicated to sufferers of individual diseases (such as AIDS, cancer, etc.), there had previously not been a day for representing sufferers of rare diseases. In 2009 Rare Disease Day went global as National Organization for Rare Disorders (NORD) mobilized 200 rare disease patient advocacy organizations in the United States while organizations in China, Australia, Taiwan, and Latin America also lead efforts in their respective countries to coordinate activities and promote the day. In addition, leading rare disease patient advocacy organizations including the Global Genes Project have joined forces to promote Rare Disease Day.
The first Rare Disease Day was held on 29 February 2008 in numerous European nations and in Canada through the Canadian Organization for Rare Disorders, organized by EURORDIS. The date was chosen because February 29 is a "rare day," and 2008 was the 25th anniversary of the passing of the Orphan Drug Act in the United States. Individuals observing Rare Disease Day took part in walks and press conferences to raise public awareness of rare diseases, organized fundraisers, and wrote en masse to government representatives; health-related non-profit organizations across numerous countries also held events, gatherings, and campaigns. The day also included an open session of the European Parliament specifically dedicated to discussing policy issues relating to rare diseases. The days leading up to Rare Disease Day included other policy-related events in numerous locations, such as a reception in the British Parliament where policymakers met with individuals with rare diseases to discuss issues such as "equal access and availability of prevention, diagnosis, treatment and rehabilitation."
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