Delhi High Court Intervenes to Revive Rare Disease Crowdfunding Platform

In a landmark move to address India’s rare disease treatment crisis, the Delhi High Court has ordered the formation of a four-member expert panel to oversee and revamp the national crowdfunding platform hosted by the Ministry of Health and Family Welfare. The platform, designed to support patients with life-threatening rare diseases, has so far failed to mobilize adequate public and corporate donations.

Judicial Trigger: A Mother's Plea for Life-Saving Treatment

The court’s intervention was prompted by a petition filed by the mother of an infant diagnosed with Spinal Muscular Atrophy (SMA)—a genetic neuromuscular disorder that causes progressive muscle wasting and respiratory failure. The child requires Zolgensma, a one-time gene therapy injection costing ₹17.5 crore, available only overseas. Despite being registered on the government’s crowdfunding portal, the family had received negligible financial support.

Justice Sachin Datta, presiding over the case, expressed concern over the platform’s underperformance. Of the 3,981 patients registered, only ₹3.91 lakh had been raised in total—highlighting a systemic failure in public outreach and donor engagement.

Understanding Rare Diseases and Their Costs

Rare diseases, also known as orphan diseases, affect a small percentage of the population but often require high-cost, precision therapies such as gene replacement, enzyme infusions, or biologics. These treatments are typically not covered under standard insurance or public health schemes due to their exorbitant costs and limited availability.

India’s National Policy for Rare Diseases (NPRD) 2021 aims to address this gap by enabling innovative funding mechanisms, including public donations and Corporate Social Responsibility (CSR) contributions.

Panel Composition and Mandate

The newly constituted committee includes:

• A Joint Secretary from the Department of Public Enterprises, Ministry of Finance
• Representatives from the Ministry of Health and Family Welfare
• Experts in CSR strategy and public health policy

The mandate:

• Boost CSR and public donations through strategic outreach
• Ensure transparency in fund allocation and patient prioritization
• Enhance platform credibility to attract sustained donor engagement

Crowdfunding Platform: How Donors Can Help

The official portal—https://rarediseases.nhp.gov.in—allows individuals and companies to:

• View verified patient profiles with medical documentation
• Donate securely via UPI, net banking, or card
• Receive tax benefits under Section 80G (subject to eligibility)
• Contribute under CSR mandates with official acknowledgment

Why This Matters

India faces a growing burden of rare diseases, with thousands of families unable to afford life-saving therapies. While government schemes offer partial support, crowdfunding can bridge the financial gap—but only if platforms are well-managed, transparent, and widely promoted.

The Delhi High Court’s directive is a critical step toward systemic reform, ensuring that India’s rare disease patients are not left behind due to funding failures.

INDIAdonates Collaborates with Noida-based corporate, Roto Pumps for Infrastructure Development of Greater Noida Government School

Friday, 12th May 2023, marked an important event in Junior High School, Dhoom Manikpur, with the commencement of Infrastructure Development activities in the school. The school students had been putting up with washrooms that were worn and broken, non-hygienic, unclean, and unsanitary. INDIAdonates, supported by Roto Pumps, have taken up a project to reconstruct the washrooms, clean and upgrade them and provide running water. A brand new handwashing station with running water will also be built for the students. Noida-based NGO Sadrag will be implementing the infrastructure development project.
 

An Inauguration Event was held on Friday to mark this important work's initiation and teach the importance of sanitation and hygiene among the students. The Event was attended by Mr. Kuldeep Tiwari, Deputy Manager, Corporate Affairs, and Mr. Anuj Kumar, Executive HR from Roto Pumps, Ms. Anuradha Singh, Trustee, INDIAdonates, as well as Retd. Major General Praveen Kumar, Advisory Board Member at Sadrag. The guests, along with Ms. Shushma Rani, Principal of JHS, Dhoom Manikpur, marked the initiation of the excellent work with a symbolic tree plantation ceremony.

Addressing the students, Ms. Anuradha Singh, Trustee of INDIAdonates, talked about sanitation and hygiene's central role in ensuring children's health, well-being, and good education. The children pledged to practice good hygiene and keep their school and surroundings clean and green.

Medical Alarm Technology Firm GPSOS to Raise up to $600K in Equity

Whanganui based GPSOS Limited first released their medical alarm technology last year, after a friend of the founder, Mark Simmonds, was unable to activate their standard medical alert pendant due to a stroke. In response, Simmonds developed an alarm that was able to travel with you, had two-way talk functionality and fall detection (among other features). A year later, the company is now expanding their influence through equity crowdfunding.

Many of the users of GPSOS are part of the disability community. Recognising this, GPSOS’ Chief Operating Officer Scott Lee has worked to ensure all aspects of the company are accessible. Through Workbridge, an employment agency for disabled people, GPSOS has hired 25 people with disabilities.

“If we’re supporting customers with disabilities, then we must hire people with disabilities. We want to use our company to provide opportunities. Our product has always been about enabling people to be confident navigating the world around them, (and) we want that to be the same in our workplace” says Scott Lee.

“GPSOS represents the future of business in New Zealand: locally founded, authentically inclusive, and customer centered – with world-leading technology to boot.” says Mark Simmonds.



GPSOS is working with equity crowdfunding platform PledgeMe to grow their business and ensure their impact continues to enhance New Zealand’s people and economy.

“We’ve spent almost four years building our technology and our team; now we need the final funds to scale.” says Simmonds.

GPSOS is seeking to raise between $250,000 and $600,000, which represents 9.4%–20% of the company. Shares are $5 each with a minimum investment of $100 for 20 shares. Investors which pledge over $50,000 will receive voting shares.

“Please invest in a company that cares about people, regional employment, and the community. We can do this together.” says Simmonds.

The equity crowdfunding campaign launched on Wednesday 3 June at 4pm here: https://pledgeme.co.nz/investments/406-gpsos-limited

The Untold Story Behind Crowd-Funding

The world is now on the Verge of evolution into the future. Technology is transforming people's life to a greater extent. With more and more advancements in technology more innovative products or evolving to provide better solutions.

These technological advancements have given birth to many start-ups that have now become synonymous with success. The success is so high that the dorm room ideas were now the biggest game changers and global leaders. The best instance to support the above statement is the rise of Facebook and Uber.

These were started as just a small idea inside a nerd and are now dominating the world with their innovative solutions and technology.

One noteworthy fact is that the founders of these startups are not at all born rich neither they had huge chunks of cash to give shape to their ideas.

Yes, what you heard is right? If you have an innovative idea inside your brain which is accompanied by significant perspiration to shape it out then will never be your problem.

All you need is firm determination to build the next big product.

One of the best method to raise funds for your startup is Crowd Funding.

If you are not aware of what exactly is crowd funding then here is a short introduction to it.

What is Crowd funding?

Crowdfunding is the practice of funding a project or venture by raising monetary contributions from a large number of people. Crowdfunding is a form of crowd sourcing and alternative finance.

To simplify things, you raise money before you launch the product. This fund would help you to build your product. Thousands of start-ups seek the crowd funding way to raise capital to their start up. These are now enjoying success with the help of crowd funding community.

They were able to deliver unique and innovative solutions to their backers in time and is just because of the faith their customers built on them.

There are several successful stories and here are some of them.

Story of PowerUp

The MacBook Charger that does more which offers a unique solution to Mac users with the revolutionary design. It raised 605 % of its initial goal to build the product. Well now with the funds they have, they can explore more ways to deliver the product.

It is just one example, and there are thousands of success stories that are to be worth hearing.

There are several platforms to raise crowd funds. Indiegogo, Kickstarter and Wishberry were few among them.

One question that struck my mind while I was case studying the projects on these sites was that what if the crowd funding goes wrong? What if the funds were misused? Does every project deliver it's word to its customers?

It is quite common to have such thoughts before backing a project on crowd funding sites. But what were the answers to the above questions?

Well in most of the cases these projects will be committed to their goal and deliver products to their customers as promised. The crowd funding platforms take all preventive measures to ensure security to backers.

But when things get flipped to the wrong side one can't expect the outcomes. Recently I came across a case wherein a company named Platc, that promised to build a universal payment card that would help you to carry a single PAN card sized payment card that would reduce the hassles in maintaining several of credit and debit cards.

It promised to offer a unique solution and had raised nearly 10 million dollars through crowd funding And has now filed for bankruptcy. 10 million dollars is an enormous amount of money that can't be ignored. It is just one instance, and there are many other such cases.

One of the most important thing that is often overlooked is how these sites handle the legal affairs when crowd funding goes wrong.

It is unclear about their actions on such incidents.

Lessons to be learnt

Every startup must be serious about their product and must work according to a timeline. The whole process of crowd funding depends on faith. So as a startup it is most important thing to gain customers faith. It is a thing that can't be build again.

And for the sites like Kickstarter and Indiegogo there should be some way to support backers when things go wrong.

When I browsed these sites, I noticed that there isn't a way to report if things turn out. In my opinion, there should be a way to flag fake projects. This is something that should be implemented to build faith among both pledgers and startups because crowd funding is being used an alternative form of financial help for specific causes which were in need.

Above is a Guest Article by Sachin Nayi, a professional-blogger from New Delhi, India

[Top Image - Shutterstock]

How To Raise Funds For Startups In India

Money is very important and it becomes even more important when it comes to a startup. You have an idea and a passion to work on it with all you have got but money is where all the problem starts. This guide illustrates one way how to raise money for a startup, especially for first-time entrepreneurs.

Angel Investing -

You can start by looking for angel investors for your startup. Angel investors are basically successful entrepreneurs who have made their fortune in the business and are now looking to invest their money back into startup businesses. Whether it’s Facebook, Google or Twitter, all these world famous businesses have had angel investors in the past. Angel investors bring more than just money to the startups. They come with a bank of connections and advice which can prove to be very beneficial to the startup. Some of the biggest Angel networks that connect entrepreneurs to investors are Investors Circle, Golden Seeds and Tech Coast Angels. Angel investors can indeed prove to be the Angels for your startups.

Bank Financing -

This is the most famous and used means to raise money for your startup. When taking a banking loan, your banker may demand that you have your loan agreement guaranteed by the Small Business Association (SBA). Once the agreement is guaranteed by the SBA, the loan is approved. The SBA is basically a government agency which guarantees up to eighty percent of the value of the loan for applicants. Only applicants who meet their criteria are guaranteed by the association. If you don’t want to go the SBA way, you can also use some other form of security such as your home etc. to get your loan approved.

Business Partner -

Let's assume that you've a brilliant idea for a business but have no money to invest in it. You can either drop the idea altogether or turn to your wealthy friend or acquaintance for help. Many of the top businesses have received seed funding from a co-founder. While selecting a business partner, you’ve to be extra careful about certain points. You should make sure that their own business aspirations and goals are in sync with yours because as a business partner, he/she will also have a control over the direction of the business.

Family and Friends -

Family and friends are the ones who stand with you through your thick and thin. If you don’t want to take the pressure of a bank loan, you always have an option of turning to your friends and family for help. They can loan you money on flexible and mutually agreed terms and conditions.

Crowd funding -

Though Crowd funding as a means of raising money for startups is still in its initial stages, it is slowly becoming popular with the young entrepreneurs. Crowd funding as the name suggests means receiving funding from the crowd. In this, the public makes use of their own personal funds to fund your startup idea. You just need to put your idea on a crowd funding idea and people can then choose how much money they want to give to your idea. Many of the crowd funding sites work on a reward based model where people who agree to invest in a particular business idea are given a reward such as the product that is going to be produced. Some famous crowd funding sites include Fundable, Indiegogo and Kicstarter.

Venture Capital -

You even have the option of turning to Venture Capitalists to raise funds for your startup. Venture Capitalists are people who invest in early stage businesses that have a high potential to grow in future. They traditionally receive equity in the startup business in return for funding it. However, nowadays the trend involves demanding a mixture of debt financing and equity.

Convertible Debt -

This means of raising money has become popular in the last few years. It has become popular because of its phenomenal success with Y Combinator Startups. Yuri Miller and SV Angel have offered $150,000 in convertible debt to every Y Combinator Startup. A convertible note by an investor converts the debt to equity in sometime in the future. This conversion is at a discount to the next funding round that the business raises and has a cap, which means if the business is successful in raising a huge round, the debt investors have protected themselves from getting diluted. In Convertible debt, you don’t have to set a valuation. This is taken care in the next round of financing. Plus, it helps to keep the costs lower as it requires less paperwork.

Second Mortgage -

You even have the option of second mortgage for raising money for your startup.

Credit Cards -

They can be used as a temporary measure between getting your company started and obtaining other financing such as getting your bank loan approved. Most of the credit cards have interest rates as high as 10-20%, hence they are not considered a good source of loan term capital. Many entrepreneurs in the past have used credit cards as a source of money for their businesses when they had no other option. Even Google, the search giant, was funded by credit cards by its founders in the mid 1990s.

Incubator Funding -

You can even get your startup incubated in incubators in India such as Microsoft Ventures (Bangalore), Startup Village (Kerala), IAN Incubator (Delhi), CIIE, IIM-Ahmedabad or global incubators like 500Startups, TechStars or Y-Combinator. These incubators offer more than just money to the startups. They even provide the startup with the much needed guidance and mentorship along with the money. The startups get to be a part of a huge network of successful entrepreneurs that helps them in getting in touch with potential customers and partners. At the end of the program, the startups are provided with an opportunity to present their ideas in front of venture capitalists and angel investors.

How To Raise Funds For Startups In India

Money is very important and it becomes even more important when it comes to a startup. You have an idea and a passion to work on it with all you have got but money is where all the problem starts. This guide illustrates one way how to raise money for a startup, especially for first-time entrepreneurs.

Angel Investing -

You can start by looking for angel investors for your startup. Angel investors are basically successful entrepreneurs who have made their fortune in the business and are now looking to invest their money back into startup businesses. Whether it’s Facebook, Google or Twitter, all these world famous businesses have had angel investors in the past. Angel investors bring more than just money to the startups. They come with a bank of connections and advice which can prove to be very beneficial to the startup. Some of the biggest Angel networks that connect entrepreneurs to investors are Investors Circle, Golden Seeds and Tech Coast Angels. Angel investors can indeed prove to be the Angels for your startups.

Bank Financing -

This is the most famous and used means to raise money for your startup. When taking a banking loan, your banker may demand that you have your loan agreement guaranteed by the Small Business Association (SBA). Once the agreement is guaranteed by the SBA, the loan is approved. The SBA is basically a government agency which guarantees up to eighty percent of the value of the loan for applicants. Only applicants who meet their criteria are guaranteed by the association. If you don’t want to go the SBA way, you can also use some other form of security such as your home etc. to get your loan approved.

Business Partner -

Let's assume that you've a brilliant idea for a business but have no money to invest in it. You can either drop the idea altogether or turn to your wealthy friend or acquaintance for help. Many of the top businesses have received seed funding from a co-founder. While selecting a business partner, you’ve to be extra careful about certain points. You should make sure that their own business aspirations and goals are in sync with yours because as a business partner, he/she will also have a control over the direction of the business.

Family and Friends -

Family and friends are the ones who stand with you through your thick and thin. If you don’t want to take the pressure of a bank loan, you always have an option of turning to your friends and family for help. They can loan you money on flexible and mutually agreed terms and conditions.

Crowd funding -

Though Crowd funding as a means of raising money for startups is still in its initial stages, it is slowly becoming popular with the young entrepreneurs. Crowd funding as the name suggests means receiving funding from the crowd. In this, the public makes use of their own personal funds to fund your startup idea. You just need to put your idea on a crowd funding idea and people can then choose how much money they want to give to your idea. Many of the crowd funding sites work on a reward based model where people who agree to invest in a particular business idea are given a reward such as the product that is going to be produced. Some famous crowd funding sites include Fundable, Indiegogo and Kicstarter.

Venture Capital -

You even have the option of turning to Venture Capitalists to raise funds for your startup. Venture Capitalists are people who invest in early stage businesses that have a high potential to grow in future. They traditionally receive equity in the startup business in return for funding it. However, nowadays the trend involves demanding a mixture of debt financing and equity.

Convertible Debt -

This means of raising money has become popular in the last few years. It has become popular because of its phenomenal success with Y Combinator Startups. Yuri Miller and SV Angel have offered $150,000 in convertible debt to every Y Combinator Startup. A convertible note by an investor converts the debt to equity in sometime in the future. This conversion is at a discount to the next funding round that the business raises and has a cap, which means if the business is successful in raising a huge round, the debt investors have protected themselves from getting diluted. In Convertible debt, you don’t have to set a valuation. This is taken care in the next round of financing. Plus, it helps to keep the costs lower as it requires less paperwork.

Second Mortgage -

You even have the option of second mortgage for raising money for your startup.

Credit Cards -

They can be used as a temporary measure between getting your company started and obtaining other financing such as getting your bank loan approved. Most of the credit cards have interest rates as high as 10-20%, hence they are not considered a good source of loan term capital. Many entrepreneurs in the past have used credit cards as a source of money for their businesses when they had no other option. Even Google, the search giant, was funded by credit cards by its founders in the mid 1990s.

Incubator Funding -

You can even get your startup incubated in incubators in India such as Microsoft Ventures (Bangalore), Startup Village (Kerala), IAN Incubator (Delhi), CIIE, IIM-Ahmedabad or global incubators like 500Startups, TechStars or Y-Combinator. These incubators offer more than just money to the startups. They even provide the startup with the much needed guidance and mentorship along with the money. The startups get to be a part of a huge network of successful entrepreneurs that helps them in getting in touch with potential customers and partners. At the end of the program, the startups are provided with an opportunity to present their ideas in front of venture capitalists and angel investors.