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 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. 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. 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.bIndividuals 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.In the United States, NORD signed on to coordinate Rare Disease Day on February 28 and collaborated with media partner The Discovery Channel and program partner Mystery Diagnosis,bas well about 180 other partners, to organize activities across the country for the observance of Rare Disease Day.vSeveral 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. The theme for Rare Disease Day 2010 was “Patients and Researchers: Partners for Life”. The event saw the participation of a total of 46 countries participated in 2010. Newcomers from Eastern Europe were Latvia, Lithuania Slovenia and Georgia. 3 African countries joined the event as well. The Theme for Rare Disease Day 2011 was “Rare Diseases and Health Inequalities”, to focus on differences for rare disease patients between and within countries, and compared to other segments of society, in order to ensure equal access for patients to health care, social services and rights, and to orphan drugs and treatments.
Rare Disease Day 2012 was the fifth to be observed and since 2012 was a leap year, this was 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 was “Solidarity” and the slogan was “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 also got involved, including more than 600 partners working with NORD in the US to promote Rare Disease Day.
The theme for 2017 is research. With many events taking place around the globe, the tagline of this year’s campaign is “with research, possibilities are limitless” – drawing attention to the fact that more research is urgently needed to help patients.