Mumbai: Impact Guru dot com, a leading integrated healthcare financing platform, reports one-of-its-kind, rare disease online donation crowdfunding movement with over 12,00,000 donors raising Rs 125 crore through 1200 rare disease crowdfunding campaigns in 14 months (January 2021 to February 2022), for patients fighting rare diseases like Spinal Muscular Atrophy (SMA type 1 & 2), Gaucher’s disease, Pompe’s disease, rare forms of Cancer and others. 

Infographic – Crowdfunding Breakthrough for Rare Disease

The findings of the report were revealed at forum, on Rare Disease Day.

Findings of Crowdfunding Movement For Rare Disease Report’

1. During these 14 months, up to 85% of the fundraisers on ImpactGuru.com for rare diseases belonged to middle-class and lower-middle-class families. These families lacked access to financial funds to afford the INR 16 crore (approx. USD 2.1 million) Zolgensma gene therapy and other medicines which are potential treatments prescribed by Indian doctors for patients fighting rare diseases. 
2. Nationally, patients based in Mumbai have raised the highest at Rs. 35 crore followed by patients residing in Bangalore, Ahmedabad, Hyderabad, and Delhi.
3. Among Impact Guru dot com’s over 1200 rare disease campaigns, over 80% of donations came from resident Indian donors.
4. On average, ImpactGuru.com donors donated Rs. 1000 towards such rare disease campaigns
5. The single highest donation received on one of the rare disease fundraisers was Rs. akh
6. One of the rare disease crowdfunding campaigns witnessed a record-breaking 265,000 Indian donors contributing towards achieving the goal amount
7. An innovative approach used for obtaining donations was printing the QR Code on T-Shirts. WhatsApp and Social Media platforms such as Facebook, Instagram, LinkedIn and Twitter provided a secure channel for donations from generous well-wishers online. Newer payment methods, Paytm and Google Pay were most frequently used.

In a joint statement Impact Guru dot com Co-Founders Piyush Jain and Khushboo Jain said, “Firstly, we applaud the government’s efforts to solve the issue of funding rare diseases and believe crowdfunding as one of the platforms for patients to receive funds whilst encouraging communities to donate for larger good under National Policy for Rare Diseases 2021. Donation crowdfunding has fundamentally changed people’s belief no matter how high the treatment cost, there is enough generosity for people to be able to find financing and receive access to quality healthcare. Having witnessed heightened generosity and multifold increase in rare disease fundraising in the past 14 months, our platform could help 4 SMA affected children (Teera Kamath, Ayaansh Gupta, Dhairyarajsinh, Ayansh Madan) get administered with the world’s most expensive gene therapy, while many other rare disease patients are in process to raise funds on ImpactGuru. We will continue to strive harder to work alongside concerned stakeholders to help patients and their affected families in providing them with the healthcare financing they need to recover.”

Alpana Sharma, Co-founder & Director-Patient Advocacy, CureSMA Foundation of India, said, “Alternative Healthcare Financing mechanism for rare diseases is the need of the hour. At present treatments for rare genetic diseases are not covered by insurance companies. Rare disease treatment is needed for life long and we lack an apt government scheme to support these patients and families. Presently, all the government schemes, both at the central and the state level are primarily for the BPL section leaving behind middle-income groups. A strong effort for effective provisions should be made for middle-class patients who are not covered under any government or private insurance. We strongly believe that platforms like ImpactGuru.com are very well equipped to help bridge the gaps.”