Financial Advocacy in Rare Diseases – the Indian Scenario

Rare disease families in India face enormous challenges. Exorbitant costs and lack of easy access to treatment take a major financial toll, often wiping out entire life savings in families. After facing the wrath of the rare disease community, the Government of India released the National Policy of Rare Disease (NPRD) on 30th March 2021. The policy aims at lowering the incidence and prevalence of rare diseases based on an integrated and comprehensive preventive strategy encompassing awareness generation, premarital, post-marital, pre-conception, and post-conception screening and counseling programs to prevent births of children with rare diseases.

There are, however, a number of constraints that limit the utilization of funds earmarked for rare disease patients in India. Despite these shortcomings, there is still a lot of untapped potential to utilize funds and schemes allowed for rare disease patients in India. Hence it is imperative to promote awareness of financial literacy and schemes so that more patients can avail of benefits from existing schemes.

Financial Advocacy in Rare Diseases – India Report 2022

Financial Advocacy in Rare Diseases

IndoUSrare undertook a study to understand the landscape of financial awareness and advocacy in India through a combination of literature analyses, online surveys, and structured interviews for various stakeholder groups.

We have put together a comprehensive report that includes a detailed analysis of financial aid schemes available in the country and the challenges faced by the rare disease community in accessing these schemes.

This report will serve as a resource to understand the current scenario and the avenues to access financial aid for rare disease patients.

Download Full Report Here
Download Full Report Here in Hindi

Webinar and Panel Discussion

Financial Advocacy in Rare Diseases – the Indian Scenario

Monday, 17 October 2022
6:30 pm IST, 9 am ET

We conducted an online event to consult with experts in the field to understand their perspectives on financial awareness and to discuss ways to access existing financial schemes in the country.

Featured Expert Panel:

  • Dr. Sheffali Gulati, Professor of Pediatrics and Chief of Child Neurology Division, Department of Pediatrics, AIIMS, New Delhi
  • Dr. Madhulika Kabra, Professor at All India Institute of Medical Sciences, New Delhi
  • Mr. Sandeep Tripathy, Senior Vice President of Business Development at Impact Guru
  • Dr. N.K Venkataramana, Founder Chairman & Director – Neurosciences at BRAINS Superspeciality Hospital, Bengaluru
  • Mr. Samir Sethi, President of the Indian Rett Syndrome Foundation

Resources for Patients and Caregivers

On this page, you will find a non-exhaustive list of financial resources available to rare disease patients in India.

Note: The resource list will be updated as we learn of more schemes

I. National schemes and resources for rare disease patients

  1. National Rare Disease Policy 2021
    The Ministry of Health and Family Welfare have provided updated instructions on how to apply for financial assistance for rare diseases as per the NPRD.
  2. Rashtriya Arogya Nidhi: The Scheme provides financial assistance to patients living below the poverty line (BPL) who are suffering from major life-threatening diseases to receive medical treatment at any of the super specialty Government hospitals/institutes.
  3. Pradhan Mantri Jan Arogya Yojana: aims to ensure access to various financial services like availability of basic savings bank accounts, access to need-based credit, remittances facility, insurance, and pension to the excluded sections i.e. weaker sections & low-income groups. This deep penetration at an affordable cost is possible only with the effective use of technology. Beneficiaries for such financial assistance would not be limited to BPL families, but extended to about 40% of the population, for their treatment in Government tertiary hospitals.
  4. Chief Minister Relief Fund – The features of the scheme are specific for each state. provides funding assistance at the discretion of the Chief Minister of the state.
    Eg:

    1. Government of Karnataka Chief Minister’s Relief Fund
    2. Government of Kerala Chief Minister’s Distress Relief Fund
  5. Crowdfunding – The Government has set up a digital platform for voluntary individual contributions and corporate donors to voluntarily contribute to the treatment cost of patients with rare diseases.
  6. Health Minister Discretionary Grant – Under the Health Minister’s Discretionary Grant (HMDG) financial assistance up to a maximum of Rs. 1.25 lakhs are provided to poor indigent patients. Only those having annual family income up to Rs.1.25 lakhs and below are eligible for financial assistance under the scheme.

II. IndoUSrare Patient Alliance Member Organizations

S.No Organization in India Disease Focus Area Website
1. Dr.Shyama Narang Foundation - MND TRUST Motor Neuron Disease https://mndtrust.co.in/
2. Indian Rett Syndrome Foundation Rett Syndrome https://rettsyndrome.in
3. IPSPI – Indian Patients Society for Primary Immunodeficiency Primary Immunodeficiency https://ipspiindia.org
4. Lysosomal Storage Disorders Support Society (LSDSS) Lysosomal Storage Disorder https://lsdssindia.org/
5. Bharat MD Foundation Duchenne muscular dystrophy https://m.facebook.com/BharathMDFoundation/

III. Other organizations in India

Good resources for disease-specific information and support

S.No Organization in India Disease Focus Area Weblink
1. Hemophilia Federation Hemophilia https://hemophilia.in/
2. Indian Prader-Willi Syndrome Association Prader-Willi syndrome https://facebook.com/IPWSA/
3. National Thalassemia Welfare Society Thalassemia https://thalassemiaindia.org/
4. Pompe Foundation Pompe Disease https://pompeindia.org/
5. Rare Diseases India All rare diseases https://rarediseasesindia.org
6. Sjogren's India Sjogren syndrome https://sjogrensindia.org
7. Thalassemic India Thalassemia https://thalassemicsindia.org

IV. International schemes and resources for rare disease patients

Below mentioned are international organizations that may provide information including opportunities to access financial aid for specific rare diseases

S.No Organization outside India Weblink
1. GLOBAL GENES https://globalgenes.org/resources/
2. NORD https://rarediseases.org/for-patients-and-families/help-access-medications/financial-assistance/
3. GARD https://rarediseases.info.nih.gov/diseases
4. EURORDIS https://www.eurordis.org/information-support/find-a-patient-organisation/
5. ORPHANET https://www.orpha.net/consor/cgi-bin/index.php

We thank Global Genes for their generous support to generate this resource through their Financial Advocacy in Rare (FAIR) Grant.

Global Genes