4.CROWDFUNDING FOR RARE DISEASES
Recently, the Delhi High Courthas ordered the Ministry of Health and Family Welfareto explore Crowdfundingto help two children, who are suffering from a Rare Diseaseknown as Duchenne Muscular Dystrophy.
Constitutional Provision Involved:
The HC held that ‘Right to Health and Healthcare’is a fundamental rightwhich has been recognised by the Supreme Court to be a part of the ‘Right to life’under Article 21of the Constitution.
Direction to the Society and Authorities:
- The High Courtdirected the society in general and authorities in particularto ensure that the life of such children is not compromised,even if there is a small window of improving their chances of survival or evenproviding a better quality of life.
- Directed the Ministry of Health and Family Welfareto give a specific timeline in respect of the finalisation and notification of the Draft HealthPolicy for Rare Diseases, 2020. The draft policy has a section where the government proposed crowdfunding for treatment of high-cost Rare
- Crowdfunding is a method of raising capital through the collective effort of a large number of individual investors.
- This approach taps into the collective efforts of a large pool of individuals, primarily online via social media and crowdfunding platforms and leverages their networks for greater reach and exposure.
- Donation-based crowdfunding is a way to source money for a project by asking a large number of contributors toindividually donate a small amount to it.
- In return, the backers may receive token rewards that increase in prestige as the size of the donation increases.
- For the smallest sums, however, the funder may receive nothing at all.
- Rewards-based crowdfunding involves individuals contributing to a business in exchange for a “reward,”typically a form of the product or service which company offers.
- Even though this method offers backers a reward, it’s still generally considered a subset of donation-based crowdfunding since there is no financial or equity return.
- Unlike the donation-based and rewards-based methods, equity-based crowdfunding allows contributors to becomepart-owners of the company by trading capital for equity shares.
- As equity owners, the contributors receive a financial return on their investment and ultimately receive a share of the profits in the form of a dividend or distribution.
- Reach – By using a crowdfunding platform, one has access to thousands of accredited investorswho can see, interact with, and share the fundraisingcampaign.
- Presentation – By creating a crowdfunding campaign, one goes through the invaluable process of looking at the business from the top level—itshistory, traction, offerings, addressable market, value proposition, with digestiblepackages.
- PR & Marketing – From launch to close, one can share and promote the campaignthrough social media, email newsletters, and other online marketingtactics.
- Validation of Concept – Presenting the concept or business to the masses affords an excellent opportunity to validate and refine offering.
- Efficiency – One of the best things about online crowdfunding is its ability to centralize and streamline fundraising efforts.
DUCHENNE MUSCULAR DYSTROPHY (DMD)
It is a genetic disordercharacterized by progressive muscle degeneration and weaknessdue to the alterations of a protein called dystrophin that helpskeep muscle cells intact.
- Muscle weakness
- Enlargement of the calves
- A waddling gait
- Lumbar lordosis (an inward curve of the spine)
SOURCE: ECONOMICS TIMES