Get-hooked February 21, 2019
Know more about the Race For 7 to mark International Rare Disease Day
28 February is observed as International Rare Disease Day a day dedicated to create awareness and support for those who have rare diseases.
The very first Rare Disease Day was observed on 29 February 2008 by a few European nations and in Canada.
Since then more countries have started observing the day and around 80 nations participated in 2018.
In India, the Organisation for Rare Diseases India (ORDI) is working on creating awareness and raising funds about the challenges faced by people who have rare diseases. This year the theme is‘ Bridging health and social care’.
What Are Rare Diseases
According to the World Health Organization (WHO) a rare disease should be defined as one which has a frequency of less than 6.5-10 per 10,000 people. The definition may vary as per the population of a country. There are around 7000 rare diseases that have been reported or documented in various parts of the world.
Most of the rare diseases have no treatment available at present, while some that can be treated are very expensive especially for developing countries like India.
In case of India, ORDI suggests that rare disease is one that affects 1 in 5,000 people or less. It is estimated that around 70 million people are affected by a rare disease in India.
One in every 20 Indians suffers from a rare disease. almost half of whom are children, an important fact that often doesn’t get highlighted. Besides lack of access to early intervention and treatment because of the lack of widespread awareness about rare diseases, the cost of treatment where available is often prohibitively expensive. We urgently need national and state policies that address the unique requirements of the rare disease community and enable them to lead lives of dignity and self-worth. – .Prasanna Shirol, Founder-Director, ORDI
ORDI organises annual marathon events to mark the International Rare Disease Day. The Run for 7 symbolizes the importance of number 7 in regards to rare diseases.
The known 7,000 rare diseases with 7,000 people running for a distance of 7 kilometers. Seven is also the average number of years that takes for a rare disease to be diagnosed.
“My association with rare diseases is because of rare genetic disorder PWS ‘Prader-Willi Syndrome’ of my son. Even people above the poverty line cannot afford the treatment, the cost of growth hormones or equipment required in rare disorder and diseases. In fact many of the rare disorders like PWS does not have a treatment available. We are making our effort to have policies and facilities like other countries to take care of our children. These children and families also have their fundamental rights as others. Racefor7 is the right platform to create the awareness and to motivate the rare disease and rare disorder patients, families, care givers, well-wishers and the government”, says Anil Choubey, Trustee & co-founder, Indian Prader-Willi Syndrome Association
This year marathons are being held all across the country in 10 cities and at different dates in February.
The 10 cities are Bengaluru, Mysuru, Chennai, Kolkata, Mumbai, Jaipur, Coimbatore, Hyderabad, New Delhi, Ahmedabad, Thiruvananthapuram and Kochi.
For more information about Race For 7 Click Here.
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