In a joint statement, ImpactGuru.com Co-Founders Piyush Jain and Khushboo Jain said, “We welcome the government’s efforts to tackle the funding problem of rare diseases and believe that raising funds from community is one of the platforms for patients to receive money while encouraging the community to donate for the greater good under the National Rare Diseases Policy 2021”.
Donation crowdfunding platforms have changed people’s belief that no matter how high the cost of treatment, there is enough generosity for people to find funding and access care. quality health.
The fundraisers of most of the events belong to middle and middle class families who do not have access to the high cost gene therapy and other drugs, which are prescribed by Indian doctors to treat the patients with rare diseases.
Over 80% of donations in over 1200 rare disease campaigns come from India-based sponsors. Among them, patients in Mumbai rose the most with 35 crore INR, followed by patients living in Bangalore, Ahmedabad, Hyderabad and Delhi.
The single highest donation received for one of the rare diseases fundraising campaigns is 56 lakh INR. A record event was witnessed during one of the rare disease crowdfunding campaigns where more than 265,000 Indian donors contributed towards reaching the target amount.. Printing a QR code on a t-shirt is an innovative method used to donate.
Social Media platforms like Facebook, Instagram, Whatsapp, LinkedIn and Twitter also provide a secure channel to receive donations from well-wishers online. In addition, Paytm and Google Pay were also used.
Currently, treatments for rare genetic diseases are not covered by health insurance companies and also lack support from government programs.
Provisions in effect should be made for lower- and middle-income patients not covered by government or private insurance. These online fundraising platforms are well equipped to help bridge the gap in the lifelong treatment of rare diseases.