Delhi High Court Forms Expert Panel to Oversee Crowdfunding Platform for Rare Diseases: A Critical Step Toward Greater Support for Patients in Need

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NEW DELHI, November 8, 2025 — In a landmark move to address the daunting costs of treating rare diseases, the Delhi High Court has constituted a high-level expert panel to supervise and fortify India’s national crowdfunding platform for rare disease patients. The court’s action responds to mounting concern over financial barriers to life-saving treatments and seeks to harness both public goodwill and corporate social responsibility to bridge critical funding gaps for families in need.

Key Findings and Recent Developments

The Delhi High Court’s intervention emerged from a particularly urgent case: an infant diagnosed with Spinal Muscular Atrophy (SMA) Type 1—an inherited neuromuscular disorder that weakens critical muscle groups, sometimes fatally. The only viable treatment, a single-dose gene therapy injection, carries an astronomical price tag of ₹17.5 crore (INR), available only overseas.

Despite the government’s earlier efforts to launch a voluntary crowdfunding portal for rare diseases under the Ministry of Health and Family Welfare, results had been underwhelming: of the 3,981 patients registered, just ₹3,91,589 had been raised—a sum representing less than 0.1% of what is needed for even a handful of treatments. The High Court acknowledged the severity of this funding shortfall and mandated the formation of a committee to not only encourage greater individual donations, but to vigorously recruit corporate contributions through India’s Corporate Social Responsibility (CSR) mandate.

Composition and Mandate of the Expert Panel

The committee is chaired by Dr. Rajiv Bahl, Secretary of the Department of Health Research, Ministry of Health and Family Welfare. Panel members include Dr. VK Paul, Member (Health), NITI Aayog, and senior officers from the Ministries of Corporate Affairs and Finance. Their mandate:

Improve and monitor the functioning of the crowdfunding platform
Devise strategies to boost donations from individuals and the private sector
Encourage corporate donors—including Public Sector Units (PSUs)—to earmark CSR funds for rare disease support
Advocate and raise awareness regarding rare diseases and the crowdfunding platform itself.
Justice Sachin Datta, presiding over the case, underscored the imperative to view affected families “through a lens of inclusion and humanity, rather than merely as medical problems.” He called for every possible effort to ensure the platform’s voluntary and innovative funding approach reaches its intended beneficiaries.

Context and Background: The Challenge of Rare Disease Treatment

Globally, rare diseases are defined as conditions affecting a small fraction of the population but demand costly, specialized treatments and long-term care. In India, the National Policy for Rare Diseases (NPRD) 2021 earmarks up to ₹50 lakhs for certain therapies, yet for many families confronting price tags in the multi-crore range for newer gene therapies, this falls far short.

Part of the solution envisioned by the Delhi High Court—and now entrusted to the committee—is amplifying the fundraising capacity of government platforms through improved outreach and policy support. The goal: to ensure that no child is denied a chance at life due to a lack of financial resources.

Expert Perspectives

Dr. Praveen Kumar, a pediatric neurologist at a leading Delhi hospital not involved in the case, welcomed the development: “Crowdfunding initiatives, especially those endorsed and overseen by competent public authorities, can drive real change. But sustained success hinges on transparent governance, community engagement, and strong partnerships with corporate India.”

Similarly, public health advocates point to global models where such campaigns—when allied with strong government backing—have enabled critical treatments for ultra-rare disorders. However, experts caution against over-reliance on public generosity and advocate for systemic funding reforms as a long-term solution.

Implications for Public Health and Patient Families

If successful, this intensified focus on combining public fundraising with CSR contributions could represent a turning point for rare disease care in India. For families facing devastating diagnoses, every rupee counts: increased funds from the platform could mean timely access to treatments that prevent irreversible disability or death.

For the broader public, the initiative shines a light on the challenges faced by people living with rare diseases—many of whom are children. This transparency may help mobilize community support, inspire legislative reforms, and foster a culture of inclusive healthcare funding.

Potential Limitations and Counterarguments

Despite the panel’s robust mandate, significant hurdles remain:

Crowdfunding reaches only a subset of patients, often those able to mount media campaigns; others may still be left behind.
CSR contributions, while appealing, are ultimately voluntary and subject to individual company policies.
Critics argue that ad hoc charitable models may not suffice where large-scale, predictable investment is required for medical innovation, infrastructure, and long-term patient support.

Additionally, the platform’s initial underperformance highlights the challenge of building public trust and sustained engagement—especially when treatments are both rare and expensive.

Practical Takeaways for Readers

Members of the public interested in supporting children and adults with rare diseases can contribute via the national crowdfunding portal established by the Indian government. Even small donations add up and can make a tangible difference for families in crisis.
Employers and business leaders are encouraged to consider rare disease initiatives in their organization’s CSR strategy, in line with the spirit of the Delhi High Court’s directive.

Conclusion

The Delhi High Court’s formation of an expert committee marks a pivotal moment in India’s struggle to guarantee equitable access to cutting-edge therapies for rare diseases. While there is much work ahead to translate intent into impact, the latest development brings renewed hope for thousands of families and positions India’s health system on a more compassionate, inclusive path.

Medical Disclaimer:
This article is for informational purposes only and should not be considered medical advice. Always consult with qualified healthcare professionals before making any health-related decisions or changes to your treatment plan. The information presented here is based on current research and expert opinions, which may evolve as new evidence emerges.