Medical Dialogues
  • Dermatology
Login Register
This site is intended for healthcare professionals only
Login Register
  • MD Brand Connect
  • Vaccine Hub
  • MDTV
    • Breaking News
    • Medical News Today
    • Health News Today
    • Latest
    • Journal Club
    • Medico Legal Update
    • Latest Webinars
    • MD Shorts
    • Health Dialogues
  • Fact Check
  • Health Dialogues
Medical Dialogues
  • Medical News & Guidelines
      • Anesthesiology
      • Cardiology and CTVS
      • Critical Care
      • Dentistry
      • Dermatology
      • Diabetes and Endocrinology
      • ENT
      • Gastroenterology
      • Medicine
      • Nephrology
      • Neurology
      • Obstretics-Gynaecology
      • Oncology
      • Ophthalmology
      • Orthopaedics
      • Pediatrics-Neonatology
      • Psychiatry
      • Pulmonology
      • Radiology
      • Surgery
      • Urology
      • Laboratory Medicine
      • Diet
      • Nursing
      • Paramedical
      • Physiotherapy
  • Health news
      • Doctor News
      • Government Policies
      • Hospital & Diagnostics
      • International Health News
      • Medical Organization News
      • Medico Legal News
      • NBE News
      • NMC News
  • Fact Check
      • Bone Health Fact Check
      • Brain Health Fact Check
      • Cancer Related Fact Check
      • Child Care Fact Check
      • Dental and oral health fact check
      • Diabetes and metabolic health fact check
      • Diet and Nutrition Fact Check
      • Eye and ENT Care Fact Check
      • Fitness fact check
      • Gut health fact check
      • Heart health fact check
      • Kidney health fact check
      • Medical education fact check
      • Men's health fact check
      • Respiratory fact check
      • Skin and hair care fact check
      • Vaccine and Immunization fact check
      • Women's health fact check
  • AYUSH
    • Ayurveda
    • Homeopathy
    • Siddha
    • Unani
    • Yoga
  • State News
      • Andaman and Nicobar Islands
      • Andhra Pradesh
      • Arunachal Pradesh
      • Assam
      • Bihar
      • Chandigarh
      • Chattisgarh
      • Dadra and Nagar Haveli
      • Daman and Diu
      • Delhi
      • Goa
      • Gujarat
      • Haryana
      • Himachal Pradesh
      • Jammu & Kashmir
      • Jharkhand
      • Karnataka
      • Kerala
      • Ladakh
      • Lakshadweep
      • Madhya Pradesh
      • Maharashtra
      • Manipur
      • Meghalaya
      • Mizoram
      • Nagaland
      • Odisha
      • Puducherry
      • Punjab
      • Rajasthan
      • Sikkim
      • Tamil Nadu
      • Telangana
      • Tripura
      • Uttar Pradesh
      • Uttrakhand
      • West Bengal
  • Medical Education
      • Ayush Education News
      • Dentistry Education News
      • Medical Admission News
      • Medical Colleges News
      • Medical Courses News
      • Medical Universities News
      • Nursing education News
      • Paramedical Education News
      • Study Abroad
  • Industry
      • Health Investment News
      • Health Startup News
      • Medical Devices News
      • Pharma News
      • Pharmacy Education News
      • Industry Perspective
  • MDTV
      • Health Dialogues MDTV
      • Health News today MDTV
      • Latest Videos MDTV
      • Latest Webinars MDTV
      • MD shorts MDTV
      • Medical News Today MDTV
      • Medico Legal Update MDTV
      • Top Videos MDTV
      • Health Perspectives MDTV
      • Journal Club MDTV
      • Medical Dialogues Show
This site is intended for healthcare professionals only
LoginRegister
Medical Dialogues
LoginRegister
  • Home
  • Medical news & Guidelines
    • Anesthesiology
    • Cardiology and CTVS
    • Critical Care
    • Dentistry
    • Dermatology
    • Diabetes and Endocrinology
    • ENT
    • Gastroenterology
    • Medicine
    • Nephrology
    • Neurology
    • Obstretics-Gynaecology
    • Oncology
    • Ophthalmology
    • Orthopaedics
    • Pediatrics-Neonatology
    • Psychiatry
    • Pulmonology
    • Radiology
    • Surgery
    • Urology
    • Laboratory Medicine
    • Diet
    • Nursing
    • Paramedical
    • Physiotherapy
  • Health news
    • Doctor News
    • Government Policies
    • Hospital & Diagnostics
    • International Health News
    • Medical Organization News
    • Medico Legal News
    • NBE News
    • NMC News
  • Fact Check
    • Bone Health Fact Check
    • Brain Health Fact Check
    • Cancer Related Fact Check
    • Child Care Fact Check
    • Dental and oral health fact check
    • Diabetes and metabolic health fact check
    • Diet and Nutrition Fact Check
    • Eye and ENT Care Fact Check
    • Fitness fact check
    • Gut health fact check
    • Heart health fact check
    • Kidney health fact check
    • Medical education fact check
    • Men's health fact check
    • Respiratory fact check
    • Skin and hair care fact check
    • Vaccine and Immunization fact check
    • Women's health fact check
  • AYUSH
    • Ayurveda
      • Ayurveda Giuidelines
      • Ayurveda News
    • Homeopathy
      • Homeopathy Guidelines
      • Homeopathy News
    • Siddha
      • Siddha Guidelines
      • Siddha News
    • Unani
      • Unani Guidelines
      • Unani News
    • Yoga
      • Yoga Guidelines
      • Yoga News
  • State News
    • Andaman and Nicobar Islands
    • Andhra Pradesh
    • Arunachal Pradesh
    • Assam
    • Bihar
    • Chandigarh
    • Chattisgarh
    • Dadra and Nagar Haveli
    • Daman and Diu
    • Delhi
    • Goa
    • Gujarat
    • Haryana
    • Himachal Pradesh
    • Jammu & Kashmir
    • Jharkhand
    • Karnataka
    • Kerala
    • Ladakh
    • Lakshadweep
    • Madhya Pradesh
    • Maharashtra
    • Manipur
    • Meghalaya
    • Mizoram
    • Nagaland
    • Odisha
    • Puducherry
    • Punjab
    • Rajasthan
    • Sikkim
    • Tamil Nadu
    • Telangana
    • Tripura
    • Uttar Pradesh
    • Uttrakhand
    • West Bengal
  • Medical Education
    • Ayush Education News
    • Dentistry Education News
    • Medical Admission News
    • Medical Colleges News
    • Medical Courses News
    • Medical Universities News
    • Nursing education News
    • Paramedical Education News
    • Study Abroad
  • Industry
    • Health Investment News
    • Health Startup News
    • Medical Devices News
    • Pharma News
      • CDSCO (Central Drugs Standard Control Organisation) News
    • Pharmacy Education News
    • Industry Perspective
  • Home
  • News
  • Health news
  • Delhi HC directs...

Delhi HC directs centre to release over Rs 5 Cr to fund clinical trials for rare diseases

Kajal RajputWritten by Kajal Rajput Published On 2023-01-01T15:15:30+05:30  |  Updated On 1 Jan 2023 3:15 PM IST
Delhi HC Dismisses Plea Against MCC Withdrawing Conversion of SC Seats to General Category

Delhi High Court

  • facebook
  • twitter
  • linkedin
  • whatsapp
  • Telegram
  • Email

The petitioners, who are suffering from several rare diseases including Duchenne Muscular Dystrophy (DMD) and Mucopolysaccharidosis II or MPS II (Hunter Syndrome), have sought direction to the Centre to provide them uninterrupted and free-of-cost treatment as the therapy is very expensive.

New Delhi: The Delhi High Court has directed the Centre to release over Rs 5 crore to fund clinical trials for the treatment of rare diseases like Duchenne Muscular Dystrophy (DMD), Hunter Syndrome and more.

A clinical trial for the development of an indigenous therapy for Duchenne Muscular Dystrophy, an inherited disorder of progressive muscular weakness, and voiced concern over efforts at crowd-funding for treating rare diseases among children not bearing the desired results.

It also suggested including donations towards the treatment of rare diseases as part of Corporate Social Responsibility under the Companies Act to facilitate more voluntary contributions.

Also Read: HC asks Centre if financial aid for rare diseases covers clinical trials of experimental DMD drug

Terming the development of therapeutic treatment for children suffering from rare diseases “a nationally important project”, it asked the Union government to consider publicising the issue on various platforms to attract more voluntary donations.

The court was hearing a batch of petitions filed on behalf of children suffering from rare diseases.

The petitioners, who are suffering from several rare diseases including Duchenne Muscular Dystrophy (DMD) and Mucopolysaccharidosis II or MPS II (Hunter Syndrome), have sought a direction to the Centre to provide them uninterrupted and free-of-cost treatment as the therapy is very expensive.

DMD, one of the various forms of muscular dystrophy, is a rare genetic disease that affects boys almost exclusively and causes progressive muscle weakness. MPS II is a rare disease that is passed on in families and mainly affects boys as their bodies cannot break down a kind of sugar that builds bones, skin, tendons and other tissues.

“The magnitude of the problem which is being suffered by children with rare diseases leaves no doubt in the mind of the court that the creation of treatment therapeutic for children with rare diseases would be considered as a nationally important project,” Justice Prathiba M Singh said. “In so far as crowd funding is concerned, it is clear that so far the efforts have not yielded much results as the issue of rare diseases does not appear to have gained enough importance in society in general.

Thus the Health Ministry could consider publicity on platforms including radio and television or publicity through other media in order to attract more voluntary donations for rare diseases,” she said.

The court also asked the Ministry of Corporate Affairs to state its stand on the request by the Health Ministry to include donations towards treatment of rare diseases as part of Corporate Social Responsibility under the Companies Act to facilitate more donations. “In order to ensure that there is a specific recognition for donation for rare diseases, the court is of the opinion that donation for rare diseases ought to be included in schedule 7 of the companies act,” the court said. The Centre said its crowd-funding platform was being publicised by using proper and effective channels.

The court was also informed that the Department of Public Enterprises has been asked to create a programme for sensitising public sector undertakings and guidelines and procedures for giving financial assistance to patients with rare diseases have also been approved by the competent authority and communicated to the Centres of Excellence. The court noted the company scheduled to conduct the clinical trials with regard to DMD in pursuance of an agreement with the Biotechnology Industry Research Assistance Council (BIRAC) was unable to start it due to lack of funds.

While directing BIRAC to release over Rs 5.35 crore towards the trial in terms of the agreement, the court said with the project having been declared as a nationally important project, the intellectual property will rest with the government.

It accordingly directed that the agreement between the two entities be drawn afresh and placed before it.

The matter will come up for a resumed hearing on January 30.

Also Read: AIIMS Jodhpur notified as Centre of Excellence under National Policy for Rare Diseases

rare diseases fund for childrenDelhi High Courtclinical trialDuchenne Muscular DystrophyNational Policy for Rare Diseasesrare diseases
Source : with inputs
Kajal Rajput
Kajal Rajput

    Kajal joined Medical Dialogue in 2019 for the Latest Health News. She has done her graduation from the University of Delhi. She mainly covers news about the Latest Healthcare. She can be contacted at editorial@medicaldialogues.in.

    Show Full Article
    Next Story

    Editorial

    Real-World Case study: Darbepoetin Alfa for Chemotherapy-Induced Anemia in Metastatic Breast Cancer - Dr Aditya Murali

    Real-World Case study: Darbepoetin Alfa for Chemotherapy-Induced Anemia in Metastatic Breast Cancer...

    Aspirin in Primary Prevention- When to Consider?

    Aspirin in Primary Prevention- When to Consider?

    Featured image representing medico legal

    What's the Role of Expert Opinion in Medical Negligence?

    7- Point Discharge Protocol for AECOPD: Time to Inculcate in Practice

    7- Point Discharge Protocol for AECOPD: Time to Inculcate in Practice

    Aspirin Use in Women Aged 40-50 with Diabetes and Hypertension: Identifying the Ideal Candidates

    Aspirin Use in Women Aged 40-50 with Diabetes and Hypertension: Identifying the Ideal Candidates

    View All

    Journal Club Today

    Real-World Case study: Darbepoetin Alfa for Chemotherapy-Induced Anemia in Metastatic Breast Cancer - Dr Aditya Murali

    Real-World Case study: Darbepoetin Alfa for Chemotherapy-Induced Anemia in Metastatic Breast Cancer...

    View All

    Health News Today

    Health Bulletin 08/ May/ 2025

    Health Bulletin 08/ May/ 2025

    View All
    © 2022 All Rights Reserved.
    Powered By: Hocalwire
    X
    We use cookies for analytics, advertising and to improve our site. You agree to our use of cookies by continuing to use our site. To know more, see our Cookie Policy and Cookie Settings.Ok