ORDI to organise ‘Racefor7’ on February 22 to create rare disease awareness

The Organisation for Rare Diseases India (ORDI) on Wednesday announced that its annual awareness run, Racefor7, will be held on February 22 in observance of Rare Disease Day.

Addressing a press conference, medical experts, patient advocates and industry representatives highlighted the persistent challenges faced by India’s rare disease community, including delayed diagnosis, high treatment costs and limited access to specialised care.

Prasanna Shirol, co-founder and executive director, ORDI, said that while awareness and policy developments such as the National Policy for Rare Diseases, 2021, marked progress, the emphasis must now shift to sustained implementation. He stressed the need for timely diagnosis, comprehensive care, and equitable access to therapies, backed by sustainable national funding and stronger research investment.

Meenakshi Bhat, head and director of the Centre for Human Genetics, said historically, rare genetic disorders were largely approached from the standpoint of early diagnosis and prevention. However, following the 2021 policy, attention has increasingly turned towards treatment, she said.

“Therapies are available for only about 5% of the 7,000 known rare disorders, and many are expensive and imported. Going forward, India must prioritise the development of indigenous and affordable treatments. Where therapies are unavailable, clinicians and scientists must collaborate to create new solutions,” Dr. Bhat said.

She announced that the Centre for Human Genetics, with support from the Karnataka government, has established the Institute of Advanced Genome Editing and Gene Therapy to develop novel treatment strategies.

The annual awareness run brings together patients, families, doctors, researchers, students, corporates, and citizens in solidarity with the rare disease community. This year’s event aims to expand public understanding, promote early diagnosis and referral, and advocate for improved access to treatment and care.