A file phot of Arogya Soudha in Bengaluru lit up to create awareness about Huntington’s disease, which is a rare, inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain.
To commemorate World Rare Disease Day, the Organization for Rare Diseases India (ORDI) is holding the 8th edition of ‘Racefor7’ on March 12 in Mysuru.
Racefor7 is an annual event by ORDI to raise awareness about the rare disease community, and advocate better policies and access to treatment for rare disease patients. Racefor7 is a seven kilometre walk/run/cycle, symbolising 7,000 known rare diseases, the average of 7 years it takes to diagnose a rare disease, and the 70 million estimated rare diseases patients in India.
The event is open to all, and will see participation by patients of rare diseases and their families.
Besides Mysuru, the event is being held in 12 other cities nationally — Davangere, New Delhi, Ahmedabad, Bengaluru, Mumbai, Kochi, Pune, Kolkata, Chennai, Hyderabad, Lucknow and Thiruvananthapuram.
Dr. Deepa Bhatt, JSS Hospital, Mysuru said globally, the last day of February is observed as Rare Diseases Day. Since 2008, JSS Academy of Higher Education and Research (JSSAHER), in association with ORDI, has organised Racefor7 on March 12. The marathon will begin from the North Gate of Mysuru palace near Kote Anjaneyaswamy temple at 6 a.m.
“We are thrilled to bring Racefor7 back to an in-person event after a virtual event the last two years because of the Covid pandemic,” said Prasanna Kumar Shirol, co-founder and Executive Director, ORDI.
Racefor7 highlights the need for preventive measures to contain rare diseases, such as consanguineous marriages, prenatal tests, informed decisions about childbirth, newborn screening, precision healthcare and innovation.
The Central Government had formulated a national policy for rare diseases, which is just the beginning of recognition of rare diseases in India.
The ORDI believes that more needs to be done, including complete care and support for all rare diseases, local drug development, and insurance coverage. ORDI wants all the State governments to come forward and take the initiative to join hands with the Centre.
