A total of approximately 8,000 patients in Haryana will now be eligible to receive financial benefits through the Chief Minister's Rare Disease Fund. Among them, around 3,000 individuals suffering from thalassemia and hemophilia, 4,000 patients with Stage-III and Stage-IV cancer, and about 1,000 individuals affected by 55 other rare diseases will be able to avail of the pension. This initiative aims to support individuals and families dealing with the financial burden of rare diseases, which often require expensive treatments and ongoing medical care.

The Delhi High Court has asked the Union Health Secretary to appear before it and explain why the Centre is not implementing its policies for the treatment of children with rare diseases. The court also asked the government to explain the delay in setting up a national rare disease policy despite court orders. The court asked the Health Secretary to explain why the policy was not implemented and why the Centre was not providing funding for the treatment of rare diseases.

In an interview with Pharma Intelligence, CEO of the Indian Organization for Rare Diseases (IORD), Prof Ramaiah Muthyala, discussed the recent customs duty exemption on imported drugs for rare diseases in India. The exemption has the potential to provide significant cost savings for patients requiring expensive medications. However, previous exemptions primarily covered drugs for specific rare diseases, and personal imports of rare disease drugs remain low with limitations on crowdfunding initiatives.