Update on Implementation of National Policy for Rare Diseases

New Delhi : In order to provide facilities for treatment and care of patients suffering from rare diseases,eight (08) Centres of Excellence have been notified, which are premier Government tertiary hospitals with facilities for diagnosis, prevention and treatment of rare diseases.List of Centres of Excellence (CoEs) is given below:

  1. All India Institute of Medical Sciences, New Delhi
  2. Maulana Azad Medical College, New Delhi
  3. Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow
  4. Post Graduate Institute of Medical Education and Research, Chandigarh
  5. Centre for DNA Fingerprinting & Diagnostics, Hyderabad
  6. King Edward Medical Hospital, Mumbai
  7. Institute of Post-Graduate Medical Education and Research, Kolkata
  8. Center for Human Genetics (CHG) with Indira Gandhi Hospital, Bengaluru

On the basis of provisions envisaged under National Policy for Rare Diseases, 2021, with regard to providing financial assistance to the patients suffering from rare diseases, it is submitted that for the diseases/ disorders amenable to one time curative treatment (listed under Group -1), financial support will be provided under umbrella scheme of RAN i.e. an amount up toRs. 20 lakh only for entitled beneficiaries shall be provided by the Central Government. The diseases requiring long term / lifelong treatment having relatively lower cost of treatment (listed under Group 2), the financial support is envisaged to be provided by the State Governments. The diseases for which definite treatment is available but involves very high cost and lifelong therapy (listed under Group 3), the policy provides assistance to the patients by creation of Digital Platform for inviting voluntary donations from individuals and corporate donors. Donors will have a choice to make donations to different Centres of Excellence (CoEs) and for the patients’ treatment by these CoEs. Funds are to be utilized in a decentralised manner, i.e. every Centre of Excellence (CoE) will have its own Rare Disease Fund which is to be utilized with the approval of in charge concerned.

The Department of Biotechnology under the Unique Methods of Management of Inherited Disorders (UMMID) initiative has supported the establishment of Genetic Diagnostic Units i.e. National Inherited Disorders Administration Kendras (NIDAN Kendras) to provide comprehensive clinical care including diagnosis, management, multidisciplinary care, counseling, prenatal testing; Training Program for producing skilled clinicians in the area of Human Genetics (Biochemical Genetics, Cytogenetics, Molecular Genetics, Clinical Genetics and Comprehensive Clinical Care); and Screening Program for pregnant women and newborn babies for diagnosis of inherited genetic diseases in aspirational districts to provide comprehensive clinical care. Autonomous institutions of the Department of Biotechnology viz.  Centre for DNA Fingerprinting and Diagnostics (CDFD), Hyderabad and National Institute of Biomedical Genomics (NIBMG), Kalyani are also providing genetic testing and counselling services for rare and genetic disorders.

The Union Minister of State for Health and Family Welfare, Dr Bharati Pravin Pawar stated this in a written reply in the Rajya Sabha today.