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 Hunters Disease (MPS Type II). The event aimed to form a Hunters Alliance, creating a unified voice to better serve patients living with Hunters disease and advocate for critical unmet needs for increased funding allocation, enabling sustainable care and support.
The Rare Diseases India Foundation (RDIF) formed National Hunter Alliance
Saurabh Singh, Co-founder and Director of Rare Diseases India Foundation, emphasized the importance of this initiative and said, “The formation of the Hunters Alliance is an important collective initiative of patient advocates. This will strive to ensure that patients with Hunters 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 Hunters Disease is immense. By roofing the patients under our existing policy, we can foster better treatment coverage and significantly improve their quality of life.”
About Hunter’s Disease
Hunter’s disease, or Mucopolysaccharidosis II, is a rare, progressive, and life-threatening lysosomal storage disorder that primarily affects males. It is caused by a deficiency of the enzyme iduronate-2-sulfatase (I2S), leading to the buildup of glycosaminoglycans (GAG) in cells, which disrupts cell and organ function. Symptoms include distinct facial features, large head, joint problems, hearing loss, cardiac issues, obstructive airway disease, sleep apnea, and enlargement of the liver and spleen. The severity and progression of symptoms vary widely, with life expectancy ranging from 10 to 20 years for severe cases, though some may live into their 50s or 60s with a relatively high quality of life.
About Rare Diseases India Foundation (RDIF)
Rare Diseases India Foundation (RDIF) a nonprofit, volunteer-driven, patient advocacy organization, for the support of the patients dealing with rare disease in India. It is led by Saurabh Singh, a rare-disease advocate.
Website: http: rdif.org.in.
