Rare Diseases India Foundation forms National Hunter Alliance

New Delhi: In a step towards addressing the needs of those affected by Hunter’s Disease (MPS Type II), the Rare Diseases India Foundation (RDIF) has initiated the formation of a National Hunter Alliance.

This alliance brings together medical experts, government officials, and patient advocates with the goal of creating a unified voice to better serve patients and tackle the critical unmet needs in the care and treatment of this rare disease.

During a national meeting organized by the RDIF, stakeholders gathered to discuss the pressing challenges faced by individuals living with Hunter’s Disease. The event focused on advocating for increased funding allocations, sustainable care, and comprehensive support systems.

Saurabh Singh, Co-founder and Director of RDIF, highlighted, “The formation of the Hunter’s Alliance is an important collective initiative of patient advocates. This will strive to ensure that patients with Hunter’s Disease receive the attention and support they need. By bringing together multi-stakeholders, our aim is to advocate for a more effective framework within the National Policy for Rare Diseases 2021 that addresses the unique challenges faced by these patients.”

He also emphasized, “The financial strain on families affected by Hunter’s Disease is immense. By roofing the patients under our existing policy, we can foster better treatment coverage and significantly improve their quality of life.”