Online Crowd Funding Platform For Treatment Of Rare Diseases Made Operational: Centre Tells Delhi High Court

The Central Government on Wednesday informed the Delhi High Court that it has set up and made operational an online crowdfunding platform for collecting funds for treatment of children suffering from rare diseases. 

The development comes pursuant to a direction made to the Government by Justice Rekha Palli last month, for immediately launching a dedicated online platform for the purpose. "Why is the platform not functional? Little children cannot be abandoned. It's not fair," the Judge had said.

Today, ASG Chetan Sharma, appearing for Union of India, stated that the portal has been made operational on the following link: "http://rarediseases.aardeesoft.com" He further assured the Bench that sincere efforts are being made to motivate PSUs and other corporate associations to contribute through this digital portal.

Justice Palli appreciated the efforts made by the Government and asked it to take further steps for wide publicity of the platform, to utilize its full potential.

During the course of hearing, Advocate Aditya Chaterjee informed the Bench that a similar matter for treatment of a child with rare disease is going on in Kerala High Court where crowd funding was attempted. He pointed out that though an amount of Rs. 46 crore has been raised therefrom, unfortunately the concerned patient has died.

What Will Happen To ₹16.5 Crores Crowdfund?: Kerala High Court Asks State After Child With Rare Disease Dies

Accordingly, he had moved an application seeking that the said funds may be put to use for treatment of other children suffering from rare diseases.

As the application filed by Chaterjee was not on record, the Court refrained from passing any orders. However, it orally asked the ASG to look into the matter.

"He is claiming that Rs. 46 crores have been collected. It is quite a good amount which can serve the purpose of these petitioners. You can see if the money is there, take steps without waiting for thid Court's order, so that these people have something," Justice Palli told the ASG.

She has also asked the Centre to examine the suggestions made by Advocate Ashok Agarwal for the newly made platform and file its response within 6 weeks. 

Advocate Rahul Malhotra sought to highlight certain "fundamental flaws" on the portal. He stated that a list of patients has been uploaded on the platform. However, the Petitioners do not find mention on the portal.

"It is expected that Union of India will update the portal on a regular basis and update the Petitioners names," the Court ordered.

Malhotra also pointed out that AIIMS was directed to make sure that all patients are scrutinized so that as and when the funds are available, they don't have to wait for diagnosis. However, the same has not been done till date. Advocate Tanveer Oberoi, appearing for the institution, claimed that a Committee for the purpose has been formed and applications are incoming.

Accordingly, the Court has asked AIIMS to file a status report within 6 weeks.

Inter alia, Malhotra stated that the crowdfunding platform claims to be a source of funds for all three groups of rare diseases patients. However, the idea was that since Group 3 diseases are costly and Government cannot afford to contribute in the same, funds may be collected for that alone. This issue will be considered by the Court on the next date, i.e. 20th September.

Case Title: Master Arnesh Shaw v. Union of India & Anr.