- The Centre’s crowdfunding portal for rare disease treatment, launched in August 2021, has raised a minimal amount of ₹3.49 lakh. 2,287 patients registered and 50 urgently need funds.
- Due to insufficient support, families turn to private crowdfunding platforms for help.
- Purpose of the Portal: The Health Ministry established the platform to gather voluntary donations from individuals or corporations for treating rare diseases.
- Challenges:
| National Policy for Rare Diseases (2021): The policy outlines financial assistance for patients based on the type of rare disease: Group 1: Diseases curable with one-time treatment receive financial support up to ₹20 lakh from the Central Government. Group 2: Diseases requiring long-term or lifelong treatment with relatively lower costs are supported by State Governments. Group 3: Diseases with high-cost lifelong treatments rely on voluntary donations via a digital platform. |
- The lack of Section 80G tax exemptions for donations.
- ₹50 lakh financial assistance limit provided by the government policy.
- The absence of corporate social responsibility (CSR) benefits for contributing firms has hindered the portal’s success.
- Epidemiological Data Collection:
- The Indian Council of Medical Research (ICMR) has initiated a National Registry to collect data on rare diseases and inherited disorders.
- There are more than 4000 rare diseases identified in government data including storage disorders, metabolic disorders, immune deficiencies, and neuromuscular disorders, have been collected.
| Funding Mechanism: Donors can contribute to Centres of Excellence (CoEs), which manage their own Rare Disease Fund. Each CoE allocates funds for patient treatment with approval from the relevant in-charge. |
Dig Deeper: Read about the “WHO Collaborative Global Network 4 Rare Diseases” and ICD-11.
