Lok Sabha Question No. 4880 (UNSTARRED), answered on 2023-03-31
Subject: Cases of Rare Diseases
Ministry: HEALTH AND FAMILY WELFARE
Asked by: P. Velusamy, Midhun Reddy

## GOVERNMENT OF INDIA MINISTRY OF HEALTH AND FAMILY WELFARE DEPARTMENT OF HEALTH AND FAMILY WELFARE

## LOK SABHA UNSTARRED QUESTION No. 4880 TO BE ANSWERED ON 31 st  March, 2023

## CASES OF RARE DISEASES

## 4880.  SHRI VELUSAMY P.: SHRI P.V. MIDHUN REDDY:

Will the Minister of HEALTH AND FAMILY WELFARE be pleased to state:

- (a)   whether there is any estimate of the number of people suffering from rare diseases in the country during 2021-22 and if so, the details thereof;
- (b)  whether it is a fact that the Government is relying on crowdfunding to provide financial support for  those  who  need  long-term,  expensive  treatments  under  the  National  Rare  Disease  Policy 2021;
- (c)   if  so,  the  details  thereof  regarding  digital  infrastructure  available  for  voluntary  individual contribution  and  corporate  donors  for  crowdfunding  and  the  mechanism  of  monitoring  fund collection for the same; and
- (d)  the details of the number of approved institutes for the treatment of rare diseases in the country, State/UT-wise including Tamil Nadu?

## ANSWER THE MINISTER OF STATE IN THE MINISTRY OF HEALTH AND FAMILY WELFARE (DR. BHARATI PRAVIN PAWAR)

(a) A disease that occurs infrequently is generally considered a rare disease, and it has been defined by different countries in terms of prevalence, either in absolute terms or in terms of prevalence per 10,000  populations.  A  country  defines  a  rare  disease  most  appropriate  in  the  context  of  its  own population, health care system and resources. However, as per the data available with Indian Council of Medical Research (ICMR) National Registry for Rare and Other Inherited Disorders (NRROID), a total of 4579 patients suffering from rare diseases have been enrolled during 2021-22.

(b)  &  (c)  The  Government  has  launched  National  Policy  for  Rare  Diseases  (NPRD),  2021  for treatment of rare disease patients. Financial assistance upto Rs. 50 lakhs is provided to the patients suffering from any category of rare diseases and getting treatment in any of the Centre of Excellence

(CoEs)  identified  under  NPRD,  2021.  Department  of  Health  &  Family  Welfare  has  launched  a Digital Portal for Voluntary Donations for Patients of Rare Diseases in accordance with the mandate of  the  policy.  The  Digital  Portal  may  be  accessed  through  https://rarediseases.nhp.gov.in/  .  The information related to patients, diseases from which they are suffering, estimated cost of treatment and  details  of  bank  accounts  of  the  Centres  of  Excellence  (CoEs)  is  available  on  the  portal.  The Donors have a choice to make donations to different CoEs and for the patients' treatment by these CoEs.  The  CoEs  have  their  own  Rare  Disease  Fund  which  is  utilized  with  the  approval  of  their competent authority.

As per provisions envisaged under Guidelines and Procedures issued on 11.08.2022, CoEs have  option  to  get  financial  assistance  from  other  agencies/drugs  manufacturers/Corporate  sector under CSR (Corporate Social Responsibility) by signing of Memorandum of Understanding (MoU) with them.

(d)  As  per  NPRD,  2021,  eleven  (11)  CoEs  have  been  identified  for  diagnosis,  prevention  and treatment of rare diseases. The details of the CoEs are 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 Uttar Pradesh
4. Post Graduate Institute of Medical Education & Research, Chandigarh
5. Centre for DNA Fingerprinting and Diagnostics with Nizam's Institute of Medical Sciences, Hyderabad
6. King Edward Memorial Hospital, Mumbai, Maharashtra
7. Centre for Human Genetics with Indira Gandhi Institute of Child Health, Bangalore, Karnataka
8. Institute of Post-Graduate Medical Education and Research, Kolkata, West Bengal
9. All India Institute of Medical Sciences, Jodhpur, Rajasthan
10. Institute of Child Health & Hospital for Children, Chennai, Tamil Nadu
11. Sree Avittam Thirunal Hospital, Government Medical College, Thiruvananthapuram, Kerala.