Digital Crowdfunding Platform For Rare Diseases Now Operational: Centre To Court

Efforts are being made to motivate people to contribute through portal, Centre assured court

New Delhi:

The Delhi High Court was informed by the Centre today that a digital platform to seek crowdfunding for expensive medicines and treatment for rare diseases has now been made operational.

While appreciating the efforts, the High Court asked the Centre to update the portal on a regular basis and to take steps for its wide publicity to utilise its full potential.

Justice Rekha Palli asked the government to include the names of petitioners, suffering from rare diseases, on the portal.

The High Court had on July 14 said it would take action for “wilful non-compliance” if the Centre failed to make operational the digital platform for crowdfunding for rare diseases.

During the hearing, Additional Solicitor General Chetan Sharma, representing the Centre, said the portal http://rarediseases.aardeesoft.com has become operational and assured that sincere efforts are being made to motivate public sector undertakings and corporate to contribute through the portal.

The court further asked the Centre to examine suggestions made by advocate Ashok Agarwal, who appeared for several of the petitioner children, for the platform and file its response within six weeks.

It listed the matter for further hearing on September 20.

The High Court had earlier said despite specific directions on January 28 that the digital crowdfunding platform is made operational by March 31, it was done.

The court was hearing a batch of petitions on behalf of children suffering from rare diseases, including Duchenne Muscular Dystrophy (DMD) 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 affects boys almost exclusively and causes progressive weakness. MPS II is a rare disease that is passed on in families and it mainly affects boys and their bodies cannot break down a kind of sugar that builds bones, skin, tendons and other tissues.

On January 28, the court had passed an order directing the central government to make operational the digital crowdfunding platform for medicines and treatment for rare illnesses.

On March 23, the court had passed a slew of directions in connection with the treatment of persons with rare diseases, including a direction to notify the National Health Policy for Rare Diseases by March 31 and setting up a National Consortium for Research, Development and Therapeutics, a rare diseases committee at AIIMS and a fund for such ailments.

It had directed that the entire unspent budget allocated for rare diseases for the past three years shall be immediately moved into the rare diseases fund, which shall be managed, supervised and utilised by nodal agency AIIMS.

The digital platform created under the Policy for receiving crowdfunding shall be linked to the fund and those individuals and companies wishing to contribute shall make direct contributions to it, the court had said.