How to raise funds through the government’s rare disease portal

The Ministry of Health and Family Welfare runs a digital portal for crowdfunding and voluntary donations for patients with rare diseases. It lists patients, their disease, the estimated cost of treatment and the bank details of the hospital treating them, so that people and companies can donate towards a named patient’s treatment.

How a patient is listed

1. Visit a Centre of Excellence (COE) with all the patient’s medical reports.
2. After evaluating the patient, the COE can register them on the portal, with the diagnosis and the estimated cost of treatment.
3. Ask the COE to confirm when the patient has been listed, and note the patient’s details as shown on the portal so you can point donors to them.

Families do not need to pay anyone to be listed. Donations are made to the COE’s account for the patient’s treatment.

How to raise funds through the portal

• Share it widely. Tell relatives, friends, neighbours and community groups how to find the patient on the portal.
• Ask employers. Companies can support treatment through their corporate social responsibility (CSR) budgets. Approach the companies where family members work, and companies near you.
• Keep donors informed. Share updates on the patient’s treatment and progress, and thank people who help.
• Use it with other sources. Most families combine several sources of help, such as support under the National Policy for Rare Diseases, crowdfunding platforms and state schemes. See our guide to treatment costs.

Stay safe

Be cautious of anyone who asks you for money to arrange treatment, funding or a place on the portal. Keep copies of all medical documents, and use the government portal or an established crowdfunding platform. If you are unsure about a request, ask us.

Crowdfunding with ImpactGuru

LSDSS has partnered with ImpactGuru, a crowdfunding company, to help LSD patients raise funds. When you register with LSDSS, choose “Yes” to registering with ImpactGuru and give your consent, and they will contact you.

Need help? LSDSS is run by parents and caregivers who have been through this. Message us on WhatsApp at +91 89288 08431, email contactus@lsdssindia.org, or register with LSDSS for free guidance.