[Treatment of Rare Diseases] Digital crowdfunding platform now operational: Centre tells Delhi High Court

The Central government on Wednesday informed the Delhi High Court that, in compliance with previous orders, a digital crowdfunding platform has been set up and made operational for aiding the treatment of rare diseases (Master Arnesh Shaw vs UOI).The Central government told the High Court that the crowdfunding platform has been set up at rarediseases.aardeesoft.com and that steps are now being taken to publicise the platform and to draw funds from major Public Sector Undertakings (PSUs) and and companies.[BREAKING] Delhi High Court sets up Rare Diseases Committee and Fund; directs notification of National Policy for Rare Diseases.The counsel appearing for petitioners submitted that some further suggestions have been made by them, which was submitted to the Court through an affidavit..In turn, Justice Rekha Palli granted six weeks time to the All India Institute of Medical Sciences (AIIMS) and the Central government to file their response to the petitioners' suggestions. .The Court was hearing a batch of petitions concerning children suffering from rare diseases..The petitioners informed the Court today that the crowdfunding platform has several flaws. .In this regard, it was pointed out that the Court had earlier directed the Centre to ensure that the platform has all the names of the petitioners who are patients with rare diseases. However, the name of one petitioner, Aviraj Garg, was missing from the list, the Court was told. .The Court was also informed that while AIIMS had been directed to run some tests on one of the petitioners, Payel Bhattacharya, the same has not been done yet. She is in crital condition and urgently needs treatment, it was submitted..Appearing for AIIMS, advocate Tanveer Oberoi informed that a Committee has been formed for the scrutiny of these patients. .The petitioners also recounted that the Kerala High Court had recently played a role in the collection of about Rs 46 crores by way of crowdfunding to help treat a petitioner with a rare disease. .However, it was further submitted the petitioner before the Kerala High Court passed away, leading the Bench to ponder how the money collected may be put to use. .The Kerala High Court had also asked the counsel for the Centre to suggest how the collected money should be used, it was submitted..The petitioners before Delhi High Court have suggested that the Centre be directed to use the fund now for their cause. Justice Palli has directed ASG Chetan Sharma to look into this matter as well.