Rare Disease Day

Last updated
Rare Disease Day
Rare Disease Day.svg
ObservancesAwareness of rare diseases
DateLast day of February
2023 dateFebruary 28
2024 dateFebruary 29
2025 dateFebruary 28
2026 dateFebruary 28
FrequencyAnnual
A Rare Disease Day event in 2018 Sandy Macrae at Rare Disease Day at NIH 2018.jpg
A Rare Disease Day event in 2018

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. [1] [2] [3] [4] [5] [6] The date is chosen because in leap years 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 networks to support individuals with rare diseases and their families; [7] furthermore, while there were already numerous days dedicated to individuals with specific diseases (such as AIDS, cancer, etc.), there had previously not been a day for representing those affected by rare diseases. [4] In 2009, Rare Disease Day went global as the 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. [3]

Contents

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. [1] [4] [8] [9] [10] The date was chosen because February 29 is a "rare day," [11] and 2008 was the 25th anniversary of the passing of the Orphan Drug Act in the United States. [7]

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; [9] health-related non-profit organizations across numerous countries also held events, gatherings, and campaigns. [12] The day also included an open session of the European Parliament specifically dedicated to discussing policy issues relating to rare diseases. [8] 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." [13]

In 2009, Rare Disease Day was observed for the first time in Panama, Colombia, Argentina, Australia, Serbia, [14] Russia, [15] the People's Republic of China, and the United States. [16] In the United States, the National Organization for Rare Disorders signed on to coordinate Rare Disease Day and collaborated with The Discovery Channel and the show Mystery Diagnosis , [17] as well about 180 other partners, [17] [18] to organize activities across the country for the observance of Rare Disease Day. [2] [10] [16] [19] [20] Several United States state governments issued proclamations regarding Rare Disease Day. [21] In Europe, over 600 patient advocacy and support organizations, again coordinated by EURORDIS, also planned events. [16] [22]

In 2010, 46 countries participated. [23] Latvia, Lithuania, Slovenia, Georgia, and three African countries joined the event for the first time. In 2011, 46 countries participated in the event. [24] 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. [25]

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. [26] 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. [27]

See also

Related Research Articles

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<span class="mw-page-title-main">Genetic disorder</span> Health problem caused by one or more abnormalities in the genome

A genetic disorder is a health problem caused by one or more abnormalities in the genome. It can be caused by a mutation in a single gene (monogenic) or multiple genes (polygenic) or by a chromosomal abnormality. Although polygenic disorders are the most common, the term is mostly used when discussing disorders with a single genetic cause, either in a gene or chromosome. The mutation responsible can occur spontaneously before embryonic development, or it can be inherited from two parents who are carriers of a faulty gene or from a parent with the disorder. When the genetic disorder is inherited from one or both parents, it is also classified as a hereditary disease. Some disorders are caused by a mutation on the X chromosome and have X-linked inheritance. Very few disorders are inherited on the Y chromosome or mitochondrial DNA.

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<span class="mw-page-title-main">National Organization for Rare Disorders</span> U.S. nonprofit organization

The National Organization for Rare Disorders (NORD) is an American non-profit organization aiming to provide support for individuals with rare diseases by advocating and funding research, education, and networking among service providers. It was founded in 1983 by Abbey Meyers, along with individuals and rare diseases leaders of rare disease support groups, and it is a 501(c)(3) tax exempt organization.

<span class="mw-page-title-main">European Organisation for Rare Diseases</span>

EURORDIS-Rare Diseases Europe (EURORDIS) is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases that promotes research on rare diseases and commercial development of orphan drugs. EURORDIS is dedicated to improving the quality of life of all people living with rare diseases in Europe. It was founded in 1997; it is supported by its members and by the French Muscular Dystrophy Association (AFM), the European Commission, corporate foundations and the health industry.

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References

  1. 1 2 Luce, Jim (10 February 2009). ""Rare Diseases" Increasingly Common, Not Rare for Afflicted". The Huffington Post . Retrieved 20 February 2009.
  2. 1 2 "Millions Around World to Observe Rare Disease Day". PR Newswire. 13 February 2009. Retrieved 14 February 2009.[ permanent dead link ]
  3. 1 2 "Why Rare Disease Day?". Rare Disease Day. Archived from the original on 3 February 2009. Retrieved 14 February 2009.
  4. 1 2 3 Parisse-Brassens, Jerome (December 2007). "29 February 2008: First European Rare Disease Day". European Organisation for Rare Diseases. Archived from the original on September 29, 2008. Retrieved 14 February 2009.
  5. ↑ "Rare Disease Day 2009". United States National Library of Medicine. 15 February 2009. Archived from the original on February 3, 2009. Retrieved 17 February 2009.
  6. ↑ "Rare Disease Day 2019 - 28 Feb". Rare Disease Day - 28 Feb 2019.
  7. 1 2 "February 29 is Rare Disease Day in Europe". Novartis. Archived from the original on 3 June 2010. Retrieved 14 February 2009.
  8. 1 2 Zurynski, Y; Frith, K; Leonard, H; Elliott, E (2008). "Rare childhood diseases: how should we respond?". Archives of Disease in Childhood. 93 (12): 1071–1074. doi:10.1136/adc.2007.134940. PMID   18684747. S2CID   32248451.
  9. 1 2 "February 29th Is The First Rare Disease Day". Medical News Today. 28 February 2008. Retrieved 14 February 2009.
  10. 1 2 "History of Rare Disease Day". National Organization for Rare Disorders. 9 January 2019.
  11. ↑ Parisse-Brassens, Jerome (December 2007). "29 February 2008: First European Rare Disease Day". European Organisation for Rare Diseases. Archived from the original on May 23, 2009. Retrieved 14 February 2009.
  12. ↑ "The First European Rare Disease Day is only two weeks away..." OrphaNews Europe. 13 February 2008. Retrieved 15 February 2009.
  13. ↑ "A Rare Day for Rare Disease". Evan Harris. 29 February 2008. Archived from the original on 18 January 2009. Retrieved 15 February 2009.
  14. ↑ "Rare Disease Day 2019 - 28 Feb - Serbia". Rare Disease Day - 28 Feb 2019. Retrieved 2019-03-01.
  15. ↑ "Rare Disease Day 2021 - 28 Feb".
  16. 1 2 3 "February 28th is Rare Disease Day". PharmiWeb.com. 12 February 2009. Archived from the original on 22 February 2014. Retrieved 14 February 2009.
  17. 1 2 "Discovery Health to air "Mystery Diagnosis ' on Rare Disease Day 2009". MediaNewsLine.com. 10 February 2009. Retrieved 14 February 2009.
  18. ↑ "Rare Disease Day Partners!". National Organization for Rare Disorders . Retrieved 14 February 2009.
  19. ↑ "National Organization for Rare Disorders To Partner With Discovery Health and 'MYSTERY DIAGNOSIS' for Rare Disease Day 2009". PR Newswire. 9 February 2009. Archived from the original on 17 June 2009. Retrieved 14 February 2009.
  20. ↑ Zander, Carly (5 February 2009). "VHL Family Alliance Announced Partner in Rare Disease Day" . Retrieved 14 February 2009.
  21. ↑ "Current Rare Disease Day Proclamations!". National Organization for Rare Disorders . Retrieved 14 February 2009.[ permanent dead link ]
  22. ↑ "Derby mum of boy with rare illness to visit Westminster". Derby Evening Telegraph . 11 February 2009. Archived from the original on 12 September 2012. Retrieved 16 February 2009.
  23. ↑ "Rare Disease Day 2010 - www.eurordis.org". Archived from the original on 2013-07-26.
  24. ↑ "Rare Disease Day - Countries". EURORDIS. Archived from the original on 2011-04-29.
  25. ↑ "Partners". National Organization for Rare Disorders . Retrieved 7 February 2012.
  26. ↑ "Rare Disease Day 2019 - 28 Feb - Article". Rare Disease Day - 28 Feb 2019.
  27. ↑ "Rare Disease Day 2019 - 28 Feb - News". Rare Disease Day - 28 Feb 2019. 28 February 2018.
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