Mumbai runs to support rare disease patients

Playback singer Shaan flags off Racefor7 Mumbai

Racefor7 Mumbai, Rare Diseases India, ORDI, Rare Genetic Diseases, Rare Disease, Organization for Rare Diseases India, Racefor7, Reframe Rare for Rare Disease Day

Racefor7, an initiative championed by the Organization for Rare Diseases India (ORDI), was organised in Mumbai to raise awareness for the rare disease community. Shaan flagged-off the run and joined hundreds of Mumbaikars who participated in the run to show how much they Care for Rare. Racefor7, a first of its kind event for rare diseases in the world, symbolically represents 7000 rare diseases with 7000 people running for 7 kilometers to represent the average number of years it takes to diagnose a rare disease.

“Rare Genetic Diseases surprisingly aren't so Rare after all. We have a long way to go in terms of advocacy, awareness and medical research in this field. Millions of Rare Disease patients need your support,” said Shaan.

Although an estimated 1 in 20 Indians suffer from a rare disease, lack of awareness and information has created several challenges for patients and their caregivers, most importantly delayed diagnosis, affordable and targeted care and treatment and access. Besides members of the general public, several rare disease patients and their families participated in Racefor7 to draw attention to the challenges faced by rare disease patients, especially children, and the urgency for governments and other institutions to recognize their unique needs and create enabling policies and a more supportive environment for them.

Racefor7 is held in the month of February to commemorate World Rare Disease Day which falls on the last day of February. The theme for Rare Disease Day 2020 is ‘Reframe Rare for Rare Disease Day’ with the message that ‘Rare is many, rare is strong and rare is proud!’. The campaign message reframes perceptions of what it means to be ‘rare’ so that no one is left behind in achieving greater equity. Racefor7, that started off as an awareness walk in Bangalore to commemorate World Rare Disease Day in February 2016, has now grown into a significant campaign that this year will be held across 20 Indian cities.

Facts about Rare Diseases

•         350 million patients globally of which 70 million rare disease patients are  in India

•         India has the world’s third highest rare disease population, more than the whole population of Thailand

•         There are an estimated 7000 known rare diseases. Only 450 are recorded  in India

•         Average of 7 years to diagnose a rare disease

•         Less than 5% of rare disease have available treatment, most unaffordable

•         72% of rare diseases have identifiable genetic origin

•         70% of rare diseases affect start in childhood

•         30% of patients with rare diseases die before the age of 5 years