Publicise crowdfunding platform for rare diseases: Delhi HC

December 09, 2022 20:39

The Delhi high court on Friday suggested formulating a plan to publicise the crowdfunding platform created by the central government under the national rare diseases policy across all Navratna companies as well as the private sector.

Justice Prathiba M Singh, while dealing with a batch of petitions for treatment of children suffering from rare diseases, said although the platform became operational pursuant to an order passed by the court in 2021, it needed to be publicised to attract funding from the general public as well as corporate entities and public sector undertakings.

"Accordingly, it is directed that a plan be prepared for publicising the crowdfunding platform across all the Navratna companies and top 10 private sector companies at least," the court said.

The court said the details of the crowdfunding platform should be communicated to these entities to enable them to consider contributing under their corporate social responsibility account, and asked for the responses received pursuant to these communications be placed on record.

The petitions have been filed on behalf children suffering from rare diseases, including duchenne muscular dystrophy and Mucopolysaccharidosis II or MPS II (Hunter Syndrome), seeking direction to the Centre to provide them uninterrupted and free of cost treatment as the therapy is very expensive.

DMD, one of the various forms of muscular dystrophy, is a rare genetic disease that almost exclusively affects boys and causes progressive weakness.

MPS II is a rare disease that is passed on in families and mainly affects boys.

The bodies of these patients cannot break down a kind of sugar that builds bones, skin, tendons and other tissues. -- PTI

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