The Delhi High Court has established a five-member panel to efficiently administer the Centres rare illness policy and ensure that its benefits reach sufferers. The National Rare Diseases Committee will look at the cases of individuals with rare diseases who are enrolled at the All India Institute of Medical Sciences (AIIMS) in Delhi.

Justice Prathiba M. Singh noted that hundreds of patients, primarily youngsters, have enrolled in the Digital Portal for Crowdfunding and Voluntary Donations for Patients with Rare Diseases launched by the Union Health Ministry under the banner of the National Policy for Rare Diseases, 2021. However, because of high expenses, limited resources, and competing health priorities, the government has been unable to completely fund their care. She also added that the number of patients on the Health Ministrys list has grown to 574 over the years, yet simple registration does not ensure prompt treatment.

Hence, in her decision dated May 15, she noted the need for some urgent steps to be taken in close coordination between the medical community, providers of therapies for rare diseases, and government agencies. She pointed out the lack of coordination between the Centres for Excellence, leading to a lack of timely availability and adequate therapies for patients with rare diseases.

Furthermore, the court ordered the panel to explore the procurement of therapies and drugs. They also asked the panel to create a logistical framework to administer treatment. The Delhi High Court directed the National Rare Diseases Committee to investigate the "urgent" need of patients to resume treatment that had been halted owing to a shortage of funds.

(Source:https://www.thehindu.com/news/national/delhi-high-court-steps-in-for-patients-of-rare-diseases-sets-up-panel-to-implement-centres-policy/article66904779.ece )