National Meeting Addresses Urgent Needs of Hunter's Disease Patients in India

The Rare Diseases India Foundation (RDIF) organized a national meeting with medical experts, government officials, and patient advocates to discuss the critical needs of Hunter's Disease (MPS Type II) patients. The event formed the Hunter's Alliance to advocate for increased funding, sustainable care, and support under the National Policy for Rare Diseases 2021.

In New Delhi, the Rare Diseases India Foundation (RDIF) convened a national meeting aimed at addressing the pressing needs of Hunter's Disease (MPS Type II) patients. The gathering united medical experts, government officials, and patient advocates to form the Hunter's Alliance, aiming to create a unified voice to better serve patients and ensure they receive the attention and support required.

Saurabh Singh, Co-founder and Director of RDIF, highlighted the importance of this initiative. He emphasized that the Hunter's Alliance would strive to incorporate Hunter's Disease into the National Policy for Rare Diseases 2021. This will help mitigate the financial strain on affected families by advocating for better funding allocation and treatment coverage.

Hunter's Disease is a rare, life-threatening condition caused by a deficiency of the enzyme iduronate-2-sulfatase (I2S), leading to severe symptoms and reduced life expectancy. Through collaborative efforts under the Hunter's Alliance, RDIF aims to significantly enhance the quality of life for these patients.

(With inputs from agencies.)