Digital crowd-funding for rare diseases possible now

NEW DELHI: The Centre on Wednesday told the Delhi High Court that it had made operational a digital platform for crowd-funding of expensive medicines and treatment for rare diseases. Appreciating the move, the high court bench of Justice Rekha Palli asked the Centre to update the portal on a regular basis and to take steps for wide publicity of the platform so that its full potential is utilised. The court also direction the inclusion of names of petitioners, who are suffering from rare diseases, on the portal.

The HC had on July 14 said it would take action for “wilful non-compliance” if the Centre failed to make operational the digital platform for crowd funding for rare diseases. It said that despite a specific direction on January 28 for making such a platform operational by March 31, it had not been done. Additional Solicitor General Chetan Sharma said the portal, http://rarediseases.aardeesoft.com, had become operational and assured that sincere efforts were being made to motivate public sector undertakings and corporate to contribute through the portal.

The court asked the Centre to examine the suggestions made by advocate Ashok Agarwal, who appeared for some of the petitioners, for the platform and file its response in six weeks. The matter was listed for further hearing on September 20. The court was hearing a batch of petitions on behalf of children suffering from rare diseases, including Duchenne Muscular Dystrophy and Mucopolysaccharidosis II or MPS II (Hunter Syndrome).