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Rare Disease Day

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Rare Disease Day is an observance held on the last day of February[1][2] to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.[1][3][4][5] 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;[6] 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.[4] 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.[3] In addition, leading rare disease patient advocacy organizations including the Global Genes Project have joined forces to promote Rare Disease Day.

2008

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,[4] organized by EURORDIS.[2][7][8][9] The date was chosen because February 29 is a "rare day,"[10] and 2008 was the 25th anniversary of the passing of the Orphan Drug Act in the United States.[6] 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;[8] health-related non-profit organizations across numerous countries also held events, gatherings, and campaigns.[11] The day also included an open session of the European Parliament specifically dedicated to discussing policy issues relating to rare diseases.[7] 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."[12]

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.[13]

In the United States 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,[14] as well about 180 other partners,[14][15] to organize activities across the country for the observance of Rare Disease Day.[1][9][13][16][17] Several United States state governments issued proclamations regarding Rare Disease Day.[18]

In Europe, over 600 patient advocacy and support organizations, again coordinated by EURORDIS, also planned events.[13][19]

2010

Rare Disease Day 2010 was observed on Sunday February 28. 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.[20] Newcomers from Eastern Europe were Latvia, Lithuania Slovenia and Georgia. 3 African countries joined the event as well.

2011

Rare Disease Day 2011 took place on February 28. Theme for 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.

The following countries participated in Rare Disease Day in 2011:[21]

  • Argentina
  • Australia
  • Austria
  • Belgium
  • Brazil
  • Bulgaria
  • Burkina FASO
  • Cameroon
  • Canada
  • China
  • Colombia
  • Croatia
  • Cyprus
  • Denmark
  • Finland
  • France
  • Georgia
  • Germany
  • Greece
  • Hong Kong
  • Hungary
  • India
  • Ireland
  • Italy
  • Japan
  • Latvia
  • Malaysia
  • Mexico
  • Morocco
  • New Zealand
  • Norway
  • Panama
  • Philippines
  • Poland
  • Portugal
  • Romania
  • Russian Federation
  • Slovenia
  • South Africa
  • Spain
  • Sweden
  • Switzerland
  • Taiwan
  • Ukraine
  • United Kingdom
  • USA

2012

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.[22][23][24] Thousands of patient advocacy organizations have gotten involved, including more than 600 partners working with NORD in the US to promote Rare Disease Day.[25]

See also

References

  1. ^ a b c "Millions Around World to Observe Rare Disease Day". PR Newswire. 13 February 2009. Retrieved 14 February 2009.
  2. ^ a b Luce, Jim (10 February 2009). ""Rare Diseases" Increasingly Common, Not Rare for Afflicted". The Huffington Post. Retrieved 20 February 2009.
  3. ^ a b "Why Rare Disease Day?". Rare Disease Day. Retrieved 14 February 2009.
  4. ^ a b c 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. {{cite web}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help)
  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. {{cite web}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help)
  6. ^ a b "February 29 is Rare Disease Day in Europe". Novartis. Retrieved 14 February 2009.
  7. ^ a b 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.{{cite journal}}: CS1 maint: multiple names: authors list (link)
  8. ^ a b "February 29th Is The First Rare Disease Day". Medical News Today. 28 February 2008. Retrieved 14 February 2009.
  9. ^ a b "History of Rare Disease Day". National Organization for Rare Disorders.
  10. ^ 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. {{cite web}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help)
  11. ^ "The First European Rare Disease Day is only two weeks away..." OrphaNews Europe. 13 February 2008. Retrieved 15 February 2009.
  12. ^ "A Rare Day for Rare Disease". Evan Harris. 29 February 2008. Retrieved 15 February 2009.
  13. ^ a b c "February 28th is Rare Disease Day". PharmiWeb.com. 12 February 2009. Retrieved 14 February 2009.
  14. ^ a b "Discovery Health to air "Mystery Diagnosis ' on Rare Disease Day 2009". MediaNewsLine.com. 10 February 2009. Retrieved 14 February 2009.
  15. ^ "Rare Disease Day Partners!". National Organization for Rare Disorders. Retrieved 14 February 2009.
  16. ^ "National Organization for Rare Disorders To Partner With Discovery Health and 'MYSTERY DIAGNOSIS' for Rare Disease Day 2009". PR Newswire. 9 February 2009. Retrieved 14 February 2009.
  17. ^ Zander, Carly (5 February 2009). "VHL Family Alliance Announced Partner in Rare Disease Day". Retrieved 14 February 2009.
  18. ^ "Current Rare Disease Day Proclamations!". National Organization for Rare Disorders. Retrieved 14 February 2009.
  19. ^ "Derby mum of boy with rare illness to visit Westminster". Derby Evening Telegraph. 11 February 2009. Retrieved 16 February 2009.
  20. ^ "Rare Disease Day 2010 - www.eurordis.org".
  21. ^ "Rare Disease Day - Countries". EURORDIS.
  22. ^ "Goals and Plans for 2012". National Organization for Rare Disorders. Retrieved 7 February 2012.
  23. ^ "Focus for 2012: Rare but Strong Together". EURORDIS. Retrieved 7 February 2012.
  24. ^ "Participating National Alliances". EURORDIS. Retrieved 7 February 2012.
  25. ^ "Partners". National Organization for Rare Disorders. Retrieved 7 February 2012.
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