3rd Sept 2024 New Delhi, Delhi, India The Rare Diseases India Foundation (RDIF) held a national meeting, bringing together medical experts, government officials, and patient advocates to address the pressing needs of those affected by Hunter’s Disease (MPS Type II). The event aimed to form a Hunter’s Alliance, creating a unified voice to better serve patients living with Hunter’s disease and advocate for critical unmet needs for increased funding allocation, enabling sustainable care and support.
Saurabh Singh, Co-founder and Director of Rare Diseases India Foundation, emphasized the importance of this initiative and said, “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. 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.”