Rare Disease Day
Encyclopedia
Rare Disease Day is an observance held on the last day of February to raise awareness for rare disease
s 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.
an 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."
, Colombia
, Argentina
, Australia
, the People's Republic of China
, and the United States
.
In the United States
the 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.
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.
equal access for patients to health care, social services and rights, and to orphan drugs and treatments.
The following countries have joined in 2011:
Rare disease
A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.Most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms do not immediately appear...
s 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
European Organization for Rare Diseases
The European Organization for Rare Diseases is a non-governmental patient-driven alliance of patient organizations and individuals active in the field of rare diseases, that promotes research on rare diseases and commercial development of orphan drugs. EURORDIS is a dedicated to improving the...
(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
AIDS
Acquired immune deficiency syndrome or acquired immunodeficiency syndrome is a disease of the human immune system caused by the human immunodeficiency virus...
, cancer
Cancer
Cancer , known medically as a malignant neoplasm, is a large group of different diseases, all involving unregulated cell growth. In cancer, cells divide and grow uncontrollably, forming malignant tumors, and invade nearby parts of the body. The cancer may also spread to more distant parts of the...
, etc.), there had previously not been a day for representing sufferers of rare diseases.
2008
The first Rare Disease Day was held on 29 February 2008 in numerous EuropeEurope
Europe is, by convention, one of the world's seven continents. Comprising the westernmost peninsula of Eurasia, Europe is generally 'divided' from Asia to its east by the watershed divides of the Ural and Caucasus Mountains, the Ural River, the Caspian and Black Seas, and the waterways connecting...
an nations and in Canada
Canada
Canada is a North American country consisting of ten provinces and three territories. Located in the northern part of the continent, it extends from the Atlantic Ocean in the east to the Pacific Ocean in the west, and northward into the Arctic Ocean...
through the Canadian Organization for Rare Disorders
Canadian Organization for Rare Disorders
The Canadian Organization for Rare Disorders is a Canadian registered charity that is a network of organizations who represent people affected by rare diseases...
, 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
United States
The United States of America is a federal constitutional republic comprising fifty states and a federal district...
. 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
Representation (politics)
In politics, representation describes how some individuals stand in for others or a group of others, for a certain time period. Representation usually refers to representative democracies, where elected officials nominally speak for their constituents in the legislature...
; 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
European Parliament
The European Parliament is the directly elected parliamentary institution of the European Union . Together with the Council of the European Union and the Commission, it exercises the legislative function of the EU and it has been described as one of the most powerful legislatures in the world...
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."
2009
Rare Disease Day was observed for the first time in PanamaPanama
Panama , officially the Republic of Panama , is the southernmost country of Central America. Situated on the isthmus connecting North and South America, it is bordered by Costa Rica to the northwest, Colombia to the southeast, the Caribbean Sea to the north and the Pacific Ocean to the south. The...
, Colombia
Colombia
Colombia, officially the Republic of Colombia , is a unitary constitutional republic comprising thirty-two departments. The country is located in northwestern South America, bordered to the east by Venezuela and Brazil; to the south by Ecuador and Peru; to the north by the Caribbean Sea; to the...
, Argentina
Argentina
Argentina , officially the Argentine Republic , is the second largest country in South America by land area, after Brazil. It is constituted as a federation of 23 provinces and an autonomous city, Buenos Aires...
, Australia
Australia
Australia , officially the Commonwealth of Australia, is a country in the Southern Hemisphere comprising the mainland of the Australian continent, the island of Tasmania, and numerous smaller islands in the Indian and Pacific Oceans. It is the world's sixth-largest country by total area...
, the People's Republic of China
People's Republic of China
China , officially the People's Republic of China , is the most populous country in the world, with over 1.3 billion citizens. Located in East Asia, the country covers approximately 9.6 million square kilometres...
, and the United States
United States
The United States of America is a federal constitutional republic comprising fifty states and a federal district...
.
In the United States
United States
The United States of America is a federal constitutional republic comprising fifty states and a federal district...
the National Organization for Rare Disorders
National Organization for Rare Disorders
The National Organization for Rare Disorders is an American non-profit organization aiming to provide support individuals with rare diseases by advocating and funding research, education, and networking among service providers...
signed on to coordinate Rare Disease Day on February 28 and collaborated with media partner The Discovery Channel and program partner Mystery Diagnosis
Mystery Diagnosis
Mystery Diagnosis is a television program that airs on the OWN: Oprah Winfrey Network. Each episode focuses on two or more individuals and their struggles to find out what ailments they suffer from....
, 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.
2010
Rare Disease Day 2010 was observed on Sunday February 28th. 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.
2011
Rare Disease Day 2011 took place on February 28th. 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 ensureequal access for patients to health care, social services and rights, and to orphan drugs and treatments.
The following countries have joined in 2011:
- 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
- Poland
- Portugal
- Romania
- Russian Federation
- Slovenia
- South Africa
- Spain
- Sweden
- Switzerland
- Taiwan
- Ukraine
- United Kingdom
- USA