Rare Disease Day

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 the European Organization 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 NORD (National Organization for Rare Disorders) 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.

In 2009 Rare Disease Day was observed for the first time in Panama, Colombia, Argentina, Australia, the People’s Republic of China, and the United States, when NORD (National Organization for Rare Disorders) signed on to coordinate Rare Disease Day on February 28 and collaborated with media partner The Discovery Channel and program partner Mystery Diagnosis as well about 180 other partners, to organize activities across the country for the observance of Rare Disease Day. Several United States state governments issued proclamations regarding Rare Disease Day. In Europe, over 600 patient advocacy and support organizations, again coordinated by EURORDIS, also planned events. Rare Disease Day 2012 is the fifth to be observed and since 2012 is a leap year, this is the second time the day falls on the originally intended date (February 29, a Wednesday). Each year, the global planning committee, under the leadership of EURORDIS and with NORD as the US representative, selects a theme to be used around the world. For 2012, the theme is “Solidarity” and the slogan is “Rare But Strong Together”. Other members of the global planning committee include representatives from the national rare disease alliances in several European countries. Thousands of patient advocacy organizations have become involved, including more than 600 partners working with NORD in the US to promote Rare Disease Day

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