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TSF India Ambassadors at the Rare Diseases Conference 2025, New Delhi

Posted by: The Sumaira Foundation in News & Announcements

On the 20^th of August, Clarinda Cerejo and Rashmi, TSF Ambassadors of India, attended the Rare Diseases Conference 2025, organized by the Federation of Indian Chambers of Commerce and Industry (FICCI), in collaboration with the Indian Medical Parliamentarians’ Forum (IMPF) and Niti Aayog, India’s premier policy think tank and advisory body.

The conference, themed, “Making Rare Care Possible: Availability, Accessibility, Awareness,” brought together policymakers, industry representatives, leading medical experts, and patient advocates. 

Distinguished panelists hailed the adoption of the Resolution on Rare Diseases at the World Health Assembly 2025 as a significant milestone and highlighted India’s role as a co-sponsor to the resolution, reiterating India’s commitment to rare diseases as a health priority. 

Discussions centered around extending the value and impact of the National Policy for Rare Diseases (NPRD) 2021 to benefit more patients; accelerating the development of indigenous drugs to drive affordability; and leveraging public-private partnerships to improve access, awareness, and quality of care.

Some startling facts and statistics were highlighted:

• As much as 5% of the population is affected by a rare disease.
• For India, the estimate stands at 84-100 million people affected by about 100 rare diseases collectively.
• About 65,000 to 75,000 children are born in India per day; but there are less than 300 clinical geneticists in India.
• Only 63 rare diseases are currently listed in the NPRD.
• There are only 13 (soon to be 14) Centers of Excellence (CoEs) across the country through which patients can be evaluated to receive funding benefits provided under the NPRD.

These stats highlight the significant health burden posed by rare diseases in India and the massive, concerted effort that would be required to bridge current infrastructure gaps and meet the needs of patients. 

The panel discussions focused on acknowledging challenges and putting forth a wide range of innovative solutions.

Some of the myriad ideas that emerged were as follows:

• Increase and incentivize drug repurposing and production of indigenous generic drugs to drive down costs.
• Launch a national rare disease program to overcome last-mile access challenges and ensure that drugs, where available, can reach all patients via appropriate state- and district-level distribution channels.
• Explore online purchase and delivery systems, with appropriate regulations and monitoring, to expand access.
• Expand private insurance policy coverage to include rare diseases.
• Focus on awareness raising via large-scale media and other initiatives at medical colleges, among pediatricians, and the general public.
• Expand care networks beyond CoEs by training frontline workers, activating medical colleges in every district, and leveraging telemedicine.
• Aim for universal genetic screening of newborns and native-language genetic counselling for every family.
• Use AI to establish a triage and referral system at the primary healthcare level.
• Strengthen referral pathways and processes so that patients can get referred to CoEs for timely treatment and access to NPRD funds.
• Include patients in CoE committees to allow co-designing of systems and processes.

While the complexities and challenges posed by rare diseases in a large, diverse, and populous country like India cannot be undermined, the Rare Diseases Conference 2025 brought together the right mix of stakeholders who are best equipped to collectively tackle these challenges. The take-home message was a strong call to action for inclusive and sustainable solutions and cross-sector partnership for rare diseases.

TSF supports a community patients with neuromyelitis optica spectrum disorder (NMOSD), myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), and transverse myelitis (TM) across India and neighboring countries. While these diseases are not listed in India’s NPRD, our participation in events like the Rare Diseases Conference 2025 and collaboration with our industry partners in India will undoubtedly pave the way for better recognition of our diseases and access to life-saving treatments for our patients.