‘Race for Seven’, awareness programmes to mark International Rare Diseases Day

To commemorate World Rare Disease Day, the Organisation for Rare Diseases India will hold the 8th edition of ‘Race for Seven’ on Sunday. The event’s objective is to raise awareness of the need for preventative measures to contain rare diseases such as consanguineous marriages, prenatal tests, and informed decisions about childbirth.

Race for Seven, a seven-kilometre walk, symbolises the 7,000 known rare diseases, the average of seven years it takes to diagnose a rare disease, and the estimated 70 million rare disease patients in India. The event is open to the general public, with rare disease patients and their families participating. The event will be held in Hyderabad and 12 other cities.

Prasanna Kumar Shirol, co-founder and Executive Director of ORDI, stated, “There is a need to address many challenges that this patient community faces, such as complete care and support for all Rare Diseases, Local Drug Development, and Insurance Coverage. It’s time that all state governments come forward and take the initiative to join hands with the central Government and extend support from their side.”

Although the Centre provides one-time financial support of up to Rs 50 lakhs through the national policy for Rare diseases, the amount is not enough to cover the expensive treatment of rare diseases.“Raising awareness about rare diseases is essential since these diseases are often so rare that they can be difficult to diagnose,” he added.