Research
Karpagam Rare Diseases Research Centre (KRDRC) is dedicated to advancing support, research, and treatment accessibility for rare disease communities in India and globally.
Research
At the Karpagam Rare Diseases Research Centre (KRDRC), we are dedicated to transforming the lives of those affected by rare diseases. Driven by a profound commitment to close the gaps in support, advocacy, and research for rare disease communities in India and worldwide, we provide essential resources, information, and hope to individuals and families facing these unique challenges. Rare diseases, defined as debilitating, lifelong conditions that occur infrequently within the population, affect millions despite their rarity. In India alone, over 277 rare diseases have been identified, with more than 7,000 recognized globally.
WHAT IS A RARE DISEASE?
- A rare disease, or orphan disease, is a medical condition affecting a relatively small number of people compared to common diseases, with criteria varying by country.
- The World Health Organization (WHO) defines a rare disease as often debilitating, lifelong, and affecting 1 or fewer per 1,000 people, though definitions differ worldwide based on population and healthcare systems.
- Despite medications being available for over 50 conditions in India, many patients face limited options and high treatment costs; KRDRC is dedicated to expanding access to critical medicines, including foreign-patented treatments.
Our Mission
Our Mission
- Providing Information & Guidance: We help patients and families with disease identification, diagnosis, and access to specialized treatment centers. Through comprehensive resources, we connect patients with approved therapeutic practices, procedures, drugs, and the costs involved.
- Driving Research: We conduct research to bring down the cost of foreign medicines in India, striving to expand treatment options for rare disease patients in need.
- Supporting Community & Advocacy: By building inclusive patient communities, hosting educational events and leading awareness campaigns, we foster a network of support and advocacy
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THE NATIONAL POLICY
The financial assistance to the patients suffering from the rare diseases shall be provided as per the provisions envisaged under the NPRD, 2021 and guidelines and procedures issued to all centres of excellence (CoEs) vide this ministry’s letter dated 11.08.2022 in 12 approved centres of excellence in rare disease up to 50 lakhs. Currently 63 rare diseases are included under National policy for rare diseases on recommendation of Central Technical Committee for Rare Diseases (CTCRD).
THE NATIONAL POLICY ON RARE DISEASE published by GOI formulated 3 groups of disorders as under
