ORDI to hold event to raise awareness about rare diseases

Racefor7 is one of the worlds largest multi-city events aimed at creating awareness and the need of preventive measures to contain rare diseases such as consanguineous marriages, prenatal tests, and informed decision about childbirth, new born screening, precision healthcare and innovation etc.Thanks to the central government, today we have a National Policy for Rare Diseases.

The Organization for Rare Diseases India (ORDI) will hold an event on March 12 in Delhi to raise awareness and advocate better policies and access to treatment for patients with rare diseases. An annual event by ORDI to commemorate World Rare Disease Day, ''RaceFor7'' is a seven kilometer walk/run/cycling, symbolizing 7,000 known rare diseases, the average of seven years it takes to diagnose a rare disease and the 70 million estimated rare diseases patients in India, officials said.

Rare Disease Day is observed on February 28.

The event is open to the general public and will see participation from rare disease patients and their families too.

Besides New Delhi, the event is being held in 12 other cities, including Davangere, Mysuru, Ahmedabad, Bengaluru, Mumbai, Kochi, Pune, Kolkata, Chennai, Hyderabad, Lucknow and Thiruvananthapuram.

Dr Neerja Gupta, Additional Professor, Division of Genetics, Department of Pediatrics, AIIMS, New Delhi, said rare diseases now have a special place among many other medical conditions, thanks to the declaration of rare disease policy and steps taken by the government towards its implementation.

''Despite diagnostic technological advancements, awareness of these conditions at the grassroots level is still required for suspicion and timely referral, which can facilitate early diagnosis and opens the possibility of timely initiation of therapy which is available for a few but evolving very rapidly,'' he said.

''We are thrilled to bring Racefor7 back to an in-person event after a virtual event the last two years because of the pandemic,'' said Prasanna Kumar Shirol, co-founder and Executive Director, ORDI. Racefor7 is one of the world's largest multi-city events aimed at creating awareness and the need of preventive measures to contain rare diseases such as consanguineous marriages, prenatal tests, and informed decision about childbirth, new born screening, precision healthcare and innovation etc.

''Thanks to the central government, today we have a National Policy for Rare Diseases. This is just the beginning of recognition of rare diseases in India. ''We still need to address the many challenges that this patient community faces like complete care and support for all rare diseases, local drug development, and insurance coverage etc,'' he said.

It's time that all the state governments come forward and take the initiative to join hands with the central government and extend support from their side, Shirol said.

Samir Sethi - Chairman -ORDI Advocacy Committee and President Indian Rett Syndrome Foundation said, ''The need of the hour is indigenous drug development for the rare diseases. ''The National Rare Disease Policy, 2021, states that pharmaceutical industries would be encouraged to develop drugs for rare diseases. The Department of Pharmaceuticals, Department for Promotion of Industry and Internal Trade (DPIIT) will be roped in to create a conducive policy framework for domestic pharmaceutical companies to focus on the research development and manufacturing of indigenous drugs for curing rare diseases.''

(This story has not been edited by Devdiscourse staff and is auto-generated from a syndicated feed.)