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Delhi HC Boosts Rare Disease Funding: New Panel to Oversee Crowdfunding

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The provided text discusses the formation of an expert panel by the Delhi High Court to oversee a national rare disease crowdfunding platform. It highlights the challenges in funding rare disease treatments in India, including exorbitant costs, limited government resources, and the struggles of existing crowdfunding initiatives. The text also mentions the National Policy for Rare Diseases (NPRD) 2021 and the role of Corporate Social Responsibility (CSR).

The content broadly touches upon healthcare funding, rare diseases, and policy. However, there isn’t a direct, strong alignment with any specific OC Academy certification or postgraduate course as the primary focus. The closest specialties would be general medical practice, or perhaps a broad understanding of healthcare policy and finance, which isn’t a direct course offering.

Given the context, the most appropriate approach is to link to a general category that encompasses patient care and broad medical knowledge, or to a specialization that might deal with rare diseases at a foundational level.

Let’s analyze the potential linking opportunities:

* **”rare disease crowdfunding platform”**: This phrase points to the need for financial solutions and support for specific medical conditions. While there isn’t a course directly on “rare disease funding,” the underlying need is for comprehensive patient care.
* **”costly treatments”**: This reinforces the financial burden aspect.
* **”Spinal Muscular Atrophy (SMA) Type 1″**: This is a specific rare disease.
* **”National Policy for Rare Diseases (NPRD) 2021″**: This relates to policy and public health.
* **”Corporate Social Responsibility (CSR)”**: This relates to funding mechanisms.
* **”patients desperately needing costly treatments”**: This broadly points to patient care.

The courses provided are highly specialized. The article is more about healthcare policy and funding challenges for rare diseases. There isn’t a direct course on rare disease management or healthcare finance.

However, the article’s theme revolves around patient care and the challenges faced by medical professionals and patients in accessing treatment. Therefore, linking to a broad “General Practice” or “Family Medicine” course could be relevant as these professionals are often the first point of contact and deal with a wide range of conditions.

Considering the context, the best fit would be to link to a general specialty that would benefit from understanding broader healthcare system issues and patient advocacy, or to a course that provides a foundation for dealing with diverse patient needs.

**Decision:** I will link to the “Certification Course In General Practice” as it represents a broad medical foundation that would be aware of and potentially involved in navigating such complex funding and patient care issues. Alternatively, “Family Medicine Speciality Courses” could also be a good fit. I will opt for “Certification Course In General Practice” for its direct course offering.

Here’s the modified HTML:

The Delhi High Court recently constituted an expert panel to oversee a national rare disease crowdfunding platform. This significant move aims to bolster financial contributions for patients desperately needing costly treatments. Such initiatives are crucial given the severe economic burden faced by families dealing with rare conditions. For instance, an infant with Spinal Muscular Atrophy (SMA) Type 1 needs a one-time injection costing approximately Rs 17.5 crore, which is only procurable from overseas.

Previously, the Ministry of Health and Family Welfare’s existing crowdfunding platform struggled to generate substantial funds. Public data reveals that out of approximately 3,981 registered patients, only Rs 3,91,589 had been collected. Evidently, a more robust approach was necessary to achieve the platform’s objectives. Therefore, the court emphasized that crowdfunding efforts must be supplemented by vigorous measures, including channeling Corporate Social Responsibility (CSR) contributions into the platform.

Boosting Rare Disease Crowdfunding Efforts

Justice Sachin Datta underscored that challenges faced by individuals with rare diseases require a lens of inclusion and humanity, not merely a medical perspective. Indeed, due to exorbitant treatment costs and limited government resources, every effort must ensure the voluntary rare disease crowdfunding platform successfully raises necessary funds. The Centre indicated that company boards plan and execute CSR funding, making it difficult to mandate for individual patient treatment. However, the court stressed the desirability of sensitizing Public Sector Undertakings (PSUs) to support rare disease initiatives and earmark CSR funds accordingly.

Composition and Mandate of the Expert Panel

The newly formed panel will be chaired by Dr. Rajiv Bahl, Secretary, Department of Health Research, Ministry of Health and Family Welfare. Other members include Dr. VK Paul, Member (Health), NITI Aayog, along with joint secretary-level officers from the Ministries of Corporate Affairs and Finance. The committee’s mandate involves ensuring suitable measures are taken to achieve the crowdfunding platform’s goals and secure sufficient resources for beneficiaries. Furthermore, the court directed the committee to raise awareness about the platform. It must also encourage potential donors to contribute to the treatment of rare disease patients. This initiative aligns with the National Policy for Rare Diseases (NPRD) 2021, which provides financial assistance up to Rs. 50 lakhs for specified treatments and promotes voluntary crowdfunding.

Challenges in Rare Disease Funding in India

India faces significant hurdles in funding rare disease treatments. The prohibitive cost of many therapies, often imported, creates an immense financial strain on families. While the NPRD 2021 offers some financial assistance, it is often insufficient to cover the full cost of lifelong treatments. The government’s crowdfunding portal, despite its intentions, has struggled to attract significant donations, as highlighted by the court’s observations. Factors like the lack of tax exemptions for donors and challenges in securing consistent corporate funding have hampered its effectiveness. Consequently, the expert panel’s role in revitalizing the rare disease crowdfunding mechanism is critical to bridging this funding gap.

Frequently Asked Questions

Q1: What is the primary purpose of the new expert panel?

The expert panel’s primary purpose is to oversee and enhance the crowdfunding platform for rare diseases. This ensures more robust fundraising efforts and better allocation of resources for patients in need.

Q2: What challenges does the rare disease crowdfunding platform face?

The platform has struggled to generate significant funds, collecting a minimal amount despite many registered patients. Challenges include high treatment costs, limited government resources, and issues with attracting consistent corporate and individual donations.

Q3: How is Corporate Social Responsibility (CSR) related to rare disease funding?

The Delhi High Court has recommended channeling CSR contributions into the crowdfunding platform. While the Centre states CSR initiatives are board-driven, the court desires sensitizing PSUs to earmark funds for rare disease patients.

References

  1. Delhi HC sets up expert panel to oversee crowdfunding platform for rare diseases – ETHealthworld
  2. Delhi HC forms panel to monitor crowdfunding for rare disease treatment. (2025, November 7). Retrieved from https://vertexaisearch.cloud.google.com/grounding-api-redirect/AUZIYQHtN605JBNFqJN4pHUg2VRfRoBl-F3R2oJtVQFjtT7tnqHVRlwfzIjOYiWuLeM9H5Lu-1jHgtQREagwBbiyGlBGJ43Hzonc_Hb3bV_k5QhakFyXSlSp04PqRrOYIi6WwtU5SsOX5oOUr0MEVZw_g03EBP7XvjHxwAKCx3coPUnonbQM97b5drfLuD1D8xHGY32hEr4ivF6z51UKLLufMHzmolBlIeMstfA0rGdHXw-SQA==
  3. Delhi High Court constitutes committee to oversee crowd-funding for treatment of rare diseases – BarandBench. (2025, November 6). Retrieved from https://vertexaisearch.cloud.google.com/grounding-api-redirect/AUZIYQH8yGwsPLIuQkQ57Y7cl0CM0KqFZkPTC6LH7hoYlurZBbwj8bK1FhN58YWuBwgpv4WYQ82kU5SMBp5tUlrc_yIT3WU1w-mF-juGl9TgwUrHP_auPAB8g0L24Y3cYWRdRMcJIPbIlpWa3mVseRYJaPCFGYzNeXBoCIchOvYMjgX6BbQpbJZqCAEhZVyKjIm7oQKn5NMmrYIHslNUbtCUnTPqn0qELFIdjNAKQUD1qY7o3V-YcaNFI1rxcA==
  4. Delhi HC sets up expert panel to oversee crowdfunding platform for rare diseases. (2025, November 6). Retrieved from https://vertexaisearch.cloud.google.com/grounding-api-redirect/AUZIYQHD8pPHpQc-Mh6H5XIqfpwRZN4HwuIqUgdrPPvfhqx1yqaiICSRnt3S2N_olkyGCu-1MdsLYkzFfjhSrHeNBrD4bJq1okhZsEfDv0Emvv2_DikzB1jT4mehIFeDoUcIQEAfjDzpzTgYSfh1fE02ukEGb314CS3AGykWvF9QvjSFB9E0X0ZozxfGo9OexARW79K2aRaSQvG2vCuis3QtIdJFMfBRoIKr7JH5WSaD3TbW9_PAA5mdcdW_rhC6R8F7vh19Ma74658bD1dkTaG1MWqdEFNRmA==
  5. Delhi HC sets up expert panel to oversee crowdfunding platform for rare diseases. (2025, November 7). Retrieved from https://vertexaisearch.cloud.google.com/grounding-api-redirect/AUZIYQGS_LOv2LLfsAXhn1wLypNnsU51tsmyxOhKpNmI-GWY0LfZPY9m72SKWqOWrArVbmIGA_RRlstXy34UJ16iexoii5DjS_daowPVX6CBhtOasz6PE3rRIc5KtQYyXKmGNdnXO_iTkIc_zCoNpEOVGFglqAavHqEwRPthdHsfCHr-XrsTMfyuYCLeaE4AheCQ6V2vbA8R90YMq4sMEl2cvBz_N-Ll2886UkPuvh7X1R0UNZ5I6qKGdp7SrhBSG7Gp3rJbvVdHqNlv4oNrQpkF
  6. National Fund for Rare Diseases Announced: ₹974 Crore Allocated for 2024–26 – IORD. (2024, December 16). Retrieved from https://vertexaisearch.cloud.google.com/grounding-api-redirect/AUZIYQF8DhvhfurM8EdwNAPcFyYuBW1bLUeKwXCTbDRMIT85Gw1u90YJGtaL7IJgTMzOpWtgwaNNC9bwENmUAfLNxzqKZFzIqvNQ4kstlSNRG3za7QE2U9Yb3Gfuf4AJiDUHwUf4qNfFTW3rgl4kiw55K0A97zJ72v1Nl621eEwglSE4Jg8mv0v3geTVQ3axghARD1ZxZ19ZbWy4XXr2gy1Tk8MNaQk=
  7. Delhi High Court Constitutes Committee To Oversee Operation Of Crowd Funding Platform For Rare Diseases Treatment – Live Law. (2025, October 31). Retrieved from https://vertexaisearch.cloud.google.com/grounding-api-redirect/AUZIYQG19jB6_R8iDORok7fEfJSO42FVfvUqeX82t0avjIcAI_kmf986tnnZ3eRuXJns22AG4NvctGQkVSAWFKbg6IWND26HWgkSFU9QdpCp8WYZMagrgdp5npLTPtOqUQq0A97o5Ky7taCXRUVn3V1KkarBXvzvvethjbHtmm3TYzz4aH2vgECYcdcf9aB1tjJkRdAjZsQyk5JSroXh7gkWybBdxZjsXPks0nyl58N7nFeJwcoXNbp2eXY2181kFnY2saozgE29kGvWh_9qKXXmNDwO5vpNFVJ1tQiikxVvX9wUbvwNAjWeCQ==
  8. National Crowdfunding Portal For Rare Diseases Fails To Meet Expectations Of Patients And Caregivers – ORDI India. Retrieved from https://vertexaisearch.cloud.google.com/grounding-api-redirect/AUZIYQECJwdUo_BLhvmcnSE0AvF5LgYKvX-ipjbLk7ZhqcxcBAaEP3kbdiznd18obuyJ3eDpFo7y14ZTR-85nkIN6KycdwzMtgoIn7khB7KwjdvmeWQkYK06LPjAD6jKxeae3HGlOi9pK7PxW8lMYQNPv_wORECF9dNNOmUiHFFtawozeqdVN65SQyQ6WFJK-dJqBuViHpdoVQr5p8w4NNNz-UPmBfDJ0n-xDSJExIZOZ_FmYcENeGKraONn8Q==
  9. India’s Rare Disease Medicine Access Crisis: Legal and Policy Overview (Part I). Retrieved from https://vertexaisearch.cloud.google.com/grounding-api-redirect/AUZIYQGNAFSxvnjJd3bcizjq3-avt7OKGDj03USpjg8jnnMHlRE1mgTJuxk3-Mv8WEPv-EeWfe440XmPZD6XLVCqir0n13NGwiph_DQ7KX0o3LvS8OaIU7bmqlLGZ6CvNEiyHXwWUSFKZUvmwX6Hcnae_XBE-App17Tm-r7kpKLVXL5q
  10. Crowdfunding For Rare Diseases: Raising Awareness And Funding For Specialized Treatments – Milaap. (2024, June 30). Retrieved from https://vertexaisearch.cloud.google.com/grounding-api-redirect/AUZIYQEUqOWdy6uRdmLCT1lCo3LjI8lTLtBvalPh4fLSyUijxi82dljRj4PB6-tRN-nVrMkDet8i_y3iuc3-vsAk9M1aMFTcVICZEzLdN48tULGuhlVwb1qVcrE31xJW653Cz-nrOhMbM8aBBu8GC_ji9MinJTR6MuidZ-MpZL1TwpgnQ6ZmNqDMXvLj9haX-7IuEsFdnQ3tUESACjyACOwz5H8_NTuCAab3eYKJyHJGXfOI1El34pXHoJUn3TUf0kUluETLIfZIOZ7LyKuHrHQ==
  11. Govt. platform to fund treatment of rare diseases comes a cropper – The Hindu. (2024, October 9). Retrieved from https://vertexaisearch.cloud.google.com/grounding-api-redirect/AUZIYQHQZAwKm_8rIVfC1rqIHfele0IxYkQZDKoPK85HVMPiwtGmxOrLBoG2LReZ3FlbL2cQyqgBBQ-uA9d0pGHJOBVujmkMeezBU27KLN0YrxZKUG2G2cPRBKW9XYp6ugGNDt23ylaXLDfNBGcMcjMb0qF9silXqcXhem9IhXzAa-i4D93Bduykn0UawcHTUtEdJfcY3Z0UHzWmKSblWOUrkng9oHnzFQhoM2RtSU4bnw2dFHxtUtYPc3yynA==
  12. Digital Portal for Crowdfunding & Voluntary Donations for Patients of Rare Diseases | Health. Retrieved from https://vertexaisearch.cloud.google.com/grounding-api-redirect/AUZIYQGC0TIJeJ-VPvORiWhjQ0wEA31u4SqPBmSPCHkFilv374XxfeIKC4AywWrQfVYopsDCSinw5P4PAqDPKsgxodPlgRbC2_byxZeR55iExMT_s7eKnhDIkMxwy-ZpOT_aBL7DXLVo3QiETS3NNj8XnZxs4l5NYgJhWybTIDG8JYGZxRaZryygAX1G1yy7q1mCJCMJxDyBz_6z1AGT0g-W5kIBqowW7FzpwnFoI5I1El34pXHoJUn3TUf0kUluETLIfZIOZ7LyKuHrHQ==
  13. National Policy for Rare Diseases – GOVERNMENT OF INDIA MINISTRY OF HEALTH AND FAMILY WELFARE DEPARTMENT OF HEALTH AND FAMILY WELFARE LOK SABHA UNSTARRED QUESTION N. (2024, November 29). Retrieved from https://vertexaisearch.cloud.google.com/grounding-api-redirect/AUZIYQG2AgN0Clm4JcRZN0BMxlGfRZHJ2xk7mZaWukS4f2khazqcQaJvE1HrSe8kg1YkYdS8zfTViiX_Ti47nOWjVq5UY_DsACKw8_r6bKvTtrckrtuncFZTwwGMmkjM29MVlfS4iIeOvisE9mmWlzVNIHBTdZYQE06NBQb429ywJZWVcj6iM5hx5TrkOLR4AZ0=
  14. NATIONAL POLICY FOR RARE DISEASES, 2021. Retrieved from https://vertexaisearch.cloud.google.com/grounding-api-redirect/AUZIYQF8-OuNquG2mLFDpVrY58p_DrEFSEDfCzJOjuIImMCsTNIod-GzohREdZ052r52ldf47DLbwoxLooePJUO1qzBjMZxgJ7x3nXVpCExsH3pvm-KLJY-tApu2OJXMjNEruCguSo6NiQILEDzbYu0GFbqoh6nIU18pwmSYD7A3YjIPobYNuldEMIOZhqY=

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