How safe are donation-based crowdfunding platforms for rare disease fundraising? – Indian times | Region & Cash

In India, considering the size of the population, the National Health Portal of India determines a disease as rare if it affects less than 1 in 2500 individuals. The National Policy for Treatment of Rare Diseases, 2017 estimates that between 72 and 96 million Indians struggle with rare diseases, 80% of which are children! Nearly 450 rare diseases have been identified in India, with Spinal Muscular Atrophy (SMA) affecting approximately one in 7,744 births. SMA is caused by the defect in both copies of the SMN1 gene. If not treated in time, the majority of patients between the ages of two and four years are at risk of losing their lives.

The high cost burden of SMA treatment

Currently, very few pharmaceutical companies make drugs for SMA disease. To offset the cost of research and development, the cost of these drugs is extremely high. Because some treatments are lifelong, drug doses and costs increase with the patient’s age and weight. for e.g. B. SMA requires what is quoted most expensive treatment in the world, Costs as high as Rs. 16 crores! Therefore, the provision of life-saving treatments can be far beyond the ability of the average Indian household to pay.

How can crowdfunding help SMA patients?

In recent times, crowdfunding has emerged as one of the most reliable and viable options for funding SMA treatments. For example,, a leading medical crowdfunding platform, has seen four record-breaking successful fundraisers to help cover costs gene replacement therapy for children with SMA. There are other online platforms like Milaap, Ketto that help families raise funds for treatment. The most helpful feature of donation-based crowdfunding is that there is no obligation to pay back. In fact, the Indian government recognized the potential of crowdfunding to help SMA patients and waived the GST on an expensive imported drug like Zolgensma.

What makes a donation-based crowdfunding platform authentic, transparent, and secure?

India has some Crowdfunding websites, so it’s obvious that questions about the authenticity of these platforms arise, whether it’s launching a fundraiser or donating to an SMA fundraiser.

  • Checking the documentation: An important part of starting a crowdfunding campaign is providing the relevant documents. Just like a bank requires documents to set up an account smoothly, crowdfunding platforms require documents to set up the fundraiser account securely. Crowdfunding platforms see many donors who are invested in a specific cause and want to contribute, but don’t know the beneficiary personally. Therefore, providing the necessary details helps to build trust and legitimize the matter.
  • Transparency and secure payments: Few crowdfunding platforms follow a transparent policy during onboarding, the fundraising process and the end of a campaign. Each donation made by a donor is displayed on the donor dashboard. On the other hand, an activist can check the progress of their fundraiser through the website and in some cases the platform through the mobile app. Donation transfers ensure that funds raised from medical fundraisers arrive safely in the hospital’s bank account. Crowdfunding platforms regularly share important updates with activists as well as donors. For example, ImpactGuru ensures your funds are safe by using the highest level of SSL encryption currently available on the internet. They ensure end-to-end security related to personal data and money transfers while adhering to various security measures and auditing protocols that ensure the security and privacy of all users on the platform. This improves the user experience for activists and donors.

With its secure and transparent features, donation-based crowdfunding is currently one of the most viable options for patients to raise funds for their SMA treatment. The fight against rare diseases like SMA is difficult with the many uncertainties and challenges involved. However, with crowdfunding, it is hoped that more families will get the right help at the right time to afford life-saving treatments.



The views expressed above are the author’s own.


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