Rare Disease Day is an observance held on the last day of February in order 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 are insufficient as the social network to support such individuals with rare disease and their families. There are many days which are dedicated to other days such as AIDS day, cancer, etc, but there was no day observed for rare disease day earlier. Rare disease day went global in 2009 as the National Organisation 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 did effort to spread the awareness in their own countries to coordinate activities and also to promote the day. In order to promote this day, Global Genes Project has joined forces with Rare Disease Day.
2008: Rare Disease Day
The first ever Rare Disease Day was held on 29th February 2008 in numerous European nations and in Canada through the help of Canadian Organisation for Rare Disorders, organized by EURORDIS. This date, i.e, 29 February was chosen because it is also a rare day, and 2008 was the 25th anniversary of the passing of the Orphan Drug Act in the United States. People who take part in Rare Disease Day every year do the following things as a tradition:
- They take part in walks,
- In press conferences to raise public awareness regarding Rare Disease Day,
- Wrote en masse to government representatives,
- Also all the health related organization around the world also held events, gatherings and campaigns.
On this day an open session of the European Parliament is specifically dedicated to discussing policy issues relating to Rare Disease Day. A reception is also held in British Parliament where policy makers meet with individuals and discuss about the kind of rare disease they have and about it’s prevention, symptoms, diagnosis, treatment and rehabilitation.
2009: Rare Disease Day
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 co-ordinated Rare Disease Day on February 28 and collaborated with media partners The Discovery channel and program partner Mystery Diagnosis, as well as about 180 other partners, to organize activities across the country for the observance of Rare Disease Day. Several state government of USA also issued proclamation regarding Rare Disease Day.
In Europe, over 600 patients advocacy and support organizations, again co-ordinated by EURORDIS, also planned events.
2010: Rare Disease Day
In 2010, Rare Disease Day was observed on Sunday, 28th February. The theme for this year, Rare Disease Day was “Patients and Researchers: Partners for Life”. A total of 46 countries participated in the events and celebrated the Rare Disease Day. New countries which joined these countries, Eastern Europe were Latvia, Lithunia Slovenia and Georgia and three African countries joined the event as well.
2011: Rare Disease Day
Rare Disease Day was observed on Sunday, February 28 in 2011 as well. The theme for this year Rare Disease Day was “Rare Diseases and Health Inequalities”, such a powerful theme. This year aim was to focus on the indifference for rare disease patients between and within countries, and compared to other segments of the society, in order to ensure equal access for patients to health care and also social services, rights and to orphan drugs and treatment.
Main objective of Rare Disease Day
The main objective of the Rare Disease Day is to raise the awareness among the general public, to people all around the world and the decision makers about rare diseases and the impact it have on the patient’s lives. The campaign generally target the general public.
The other main objective of Rare Disease Day is, also seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases.
Rare Disease Day: Key Figures
A disease or a disorder is as rare in Europe when it affects fewer than one in 2000. And in the USA when it affects than 200,000, Americans at a given time.
Rare Disease Day: 2017
Today, events are taking place in over ninety countries all over the world. This year theme is research, and the slogan is ” With research, the possibilities are limitless”, very motivational slogan for this year Rare Disease Day.
Rare Disease Day, 2017 is an opportunity to call and spread awareness to all the researchers, universities, students, policymakers, and clinicians to do more research and to make them aware about the importance of research for the rare disease community.
Rare Disease Day, this year, video has been watched by over a thousand viewers and has been translated into thirty languages. The video shows that how isolating it is when you search on the internet ” Rare Disease Day”, and no options come. This year four African nations will also held the ” Rare Disease Day “, these nations are, Botswana, Nigeria, Senegal, and Sudan. Events will also be held for the first time in Saint Pierre and Miquelon.
Rare Disease Day in India
In India, patients organizations became involved with Rare Disease Day in 2010. Since then, In India, Rare Disease Day since then is celebrated with full compassion, they held various competitions, sessions, and school visits this day to spread awareness regarding Rare Disease Day. In 2012, Rare Disease Day in India attracted mass media attention when singer Shan sang for the event. In 2016, events were held in Bangalore, Jaipur, Guntur, Delhi, and Chennai.
Rare Disease Day is a great way to tell the world and also to draw the attention of the whole world towards those who suffers from such diseases people even do not know about, can you imagine there are lots of people who might have one of these disease but do not even know about as there is no awareness regarding this. This is the only reason “Rare Disease Day”, is extremely significant for those who wants their life to be better and rescued. We all should join hands and make Rare Disease Day more memorable.