Rare Disease Day
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Rare Disease Day is an observance held on the last day of February to raise awareness for
rare disease A rare disease is any disease that affects a small percentage of the population. In some parts of the world, the term orphan disease describes a rare disease whose rarity results in little or no funding or research for treatments, without financi ...
s and improve access to treatment and medical representation for individuals with rare diseases and their families. The date is chosen because in
leap year A leap year (also known as an intercalary year or bissextile year) is a calendar year that contains an additional day (or, in the case of a lunisolar calendar, a month) compared to a common year. The 366th day (or 13th month) is added to keep t ...
s it is February 29, the rarest date. The European Organisation for Rare Diseases established the day in 2008 to raise awareness for unknown or overlooked illnesses. According to that organization, treatment for many rare diseases is insufficient, as are the
social network A social network is a social structure consisting of a set of social actors (such as individuals or organizations), networks of Dyad (sociology), dyadic ties, and other Social relation, social interactions between actors. The social network per ...
s to support individuals with rare diseases and their families; furthermore, while there were already numerous days dedicated to individuals with specific diseases (such as
AIDS The HIV, human immunodeficiency virus (HIV) is a retrovirus that attacks the immune system. Without treatment, it can lead to a spectrum of conditions including acquired immunodeficiency syndrome (AIDS). It is a Preventive healthcare, pr ...
,
cancer Cancer is a group of diseases involving Cell growth#Disorders, abnormal cell growth with the potential to Invasion (cancer), invade or Metastasis, spread to other parts of the body. These contrast with benign tumors, which do not spread. Po ...
, etc.), there had previously not been a day for representing those affected by rare diseases. In 2009, Rare Disease Day went global as the
National Organization for Rare Disorders The National Organization for Rare Disorders (NORD) is a nonprofit organization, based in Connecticut, aiming to provide support for individuals with rare diseases by advocating and funding research, education, and networking among service pro ...
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.


History

The first Rare Disease Day was coordinated by the European Organisation for Rare Diseases (EURORDIS) and held on February 29, 2008, in numerous European nations and in Canada through the
Canadian Organization for Rare Disorders The Canadian Organization for Rare Disorders (CORD) is a Canadian registered charity that is a network of organizations who represent people affected by rare diseases. CORD's purpose is to provide a strong common voice advocating for a healthca ...
. 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 The Orphan Drug Act of 1983 is a law passed in the United States to facilitate development of orphan drugs—drugs for rare diseases such as Huntington's disease, myoclonus, ALS, Tourette syndrome or muscular dystrophy which affect small numbers ...
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 A nonprofit organization (NPO), also known as a nonbusiness entity, nonprofit institution, not-for-profit organization, or simply a nonprofit, is a non-governmental (private) legal entity organized and operated for a collective, public, or so ...
across numerous countries also held events, gatherings, and campaigns. The day also included an open session of the
European Parliament The European Parliament (EP) is one of the two legislative bodies of the European Union and one of its seven institutions. Together with the Council of the European Union (known as the Council and informally as the Council of Ministers), it ...
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 The Parliament of the United Kingdom of Great Britain and Northern Ireland is the supreme legislative body of the United Kingdom, and may also legislate for the Crown Dependencies and the British Overseas Territories. It meets at the Palace of ...
where policymakers met with individuals with rare diseases to discuss issues such as "equal access and availability of
prevention Prevention may refer to: Health and medicine * Preventive healthcare, measures to prevent diseases or injuries rather than curing them or treating their symptoms General safety * Crime prevention, the attempt to reduce deter crime and crimin ...
,
diagnosis Diagnosis (: diagnoses) is the identification of the nature and cause of a certain phenomenon. Diagnosis is used in a lot of different academic discipline, disciplines, with variations in the use of logic, analytics, and experience, to determine " ...
, treatment and rehabilitation." In 2009, Rare Disease Day was observed for the first time in Panama, Colombia, Argentina, Australia, Serbia, Russia, the People's Republic of China, and the United States. In the United States, the
National Organization for Rare Disorders The National Organization for Rare Disorders (NORD) is a nonprofit organization, based in Connecticut, aiming to provide support for individuals with rare diseases by advocating and funding research, education, and networking among service pro ...
signed on to coordinate Rare Disease Day and collaborated with
The Discovery Channel Discovery Channel, known as The Discovery Channel from 1985 to 1995, and often referred to as simply Discovery, is an American cable channel that is best known for its ongoing reality television shows and promotion of pseudoscience. It initi ...
and the show '' 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. In 2010, 46 countries participated. Latvia, Lithuania, Slovenia, Georgia, and three African countries joined the event for the first time. In 2011, 46 countries participated in the event. By 2012, thousands of patient advocacy organizations had gotten involved, including more than 600 partners working with NORD in the US to promote Rare Disease Day. By 2014, 84 countries were participating, with over four hundred events worldwide. Nine new countries participated in 2014; Cuba, Ecuador, Egypt, Guinea, Jordan, Kazakhstan, Kenya, Oman, and Paraguay. In 2018, Cape Verde, Ghana, Syria, Togo, and Trinidad and Tobago participated for the first time, with 80 nations participating in that year's events.


Light Up for Rare

Light Up for Rare is a global initiative launched as part of Rare Disease Day to raise visibility for people living with rare diseases. Iconic landmarks and buildings are lit up in Rare Disease Day colors—pink, purple, green, and blue—to show solidarity. The campaign is supported by industry leaders, government institutions, and patient organizations. In 2025, Leiden Bio Science Park was dedicated to Rare Disease Day, an initiative led by JPP – Life Sciences and Empowered By Us, in collaboration with BioPartner, Necstgen, Biotech Training Facility, Center for Human Drug Research, TNO, Kadans,
Leiden University Leiden University (abbreviated as ''LEI''; ) is a Public university, public research university in Leiden, Netherlands. Established in 1575 by William the Silent, William, Prince of Orange as a Protestantism, Protestant institution, it holds the d ...
and various other park organizations.https://leidenbiosciencepark.nl/news/light-up-for-rarediseaseday/ Tokyo Tower lightup for Rare Disease Day 2024.jpg, Tokyo Tower lightup for Rare Disease Day (2024) Leaning Tower of Pisa lightup for Rare Disease Day 2024-01.jpg, Leaning Tower of Pisa lightup for Rare Disease Day (2024) Biotech Training Facility - Leiden Bio Science Park - Rare Disease Day 2025.jpg, Biotech Training Facility at the Leiden Bio Science Park (2025) Gorlaeus Building - Leiden University - Rare Disease Day 2025.jpg , The Gorlaeus Building of the
Leiden University Leiden University (abbreviated as ''LEI''; ) is a Public university, public research university in Leiden, Netherlands. Established in 1575 by William the Silent, William, Prince of Orange as a Protestantism, Protestant institution, it holds the d ...
, rare disease day (2025) BioPartner_1_-_Rare_Disease_Day_2025_-_Leiden.jpg , BioPartner hub during the rare disease campaign at Leiden BioScience Park (2025)


See also

* :Rare diseases * World Health Observances


References

{{reflist, 2


External links


Rare Disease Day
official site
Rare Disease Day US
official US site February observances Health awareness days Recurring events established in 2008