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TSF Participates in India’s Workshop on the National Rare Disease Policy

Posted by: The Sumaira Foundation in News & Announcements

On June 13, 2023, TSF’s India Ambassador, Clarinda Cerejo participated in a multi-stakeholder workshop on the national rare disease policy of India in Delhi, India.

The workshop was organized by one of India’s leading patient advocates, Dr. Ratna Devi and her team, and was attended by government representatives, medical and industry professionals working in rare diseases, and fellow rare disease advocates. 

Dr. Devi kicked off the event by explaining the challenges that rare disease patients and advocacy groups face and our expectations of the government. 

Dr. L. Swasticharan, Director General of Health Services, Ministry of Health, shared initiatives the Indian government is leading to increase reach and access for rare diseases. Many significant strides have been made in the last two years:

• The policy offers financial support up to 50 lakh INR for patients.
• 11 Centres of Excellence (CoEs) across the country have been established for rare diseases.
• In FY2022-2023, approximately 35 crore INR was disbursed to 203 patients.
• In FY2023-2024, 43 crore INR has been sanctioned to date.

Medical experts leading CoE efforts discussed the ground realities and challenges that doctors, patients, and administrators face while navigating the complexities that are inevitable in trying to operationalize a policy directive for such a large population. 

Finally, working groups discussed innovative ideas to 

• Increase awareness about the policy
• Establish referral networks and pathways so that more patients can be directed to CoEs
• Create access networks and financing frameworks for timely fund disbursement

Our recommendations will be formally proposed to the government, and we look forward to a continued productive dialogue. 

While NMOSD and MOGAD are not currently listed in the national rare disease policy of India, TSF stands by affected patients. This meeting was an important first step in our advocacy efforts in India, and we look forward to these diseases soon being included in the India policy. 

Jai Hind!