Rare Disease India Foundation Leads the Initiative to Form Hunter's Alliance
Sep 02, 2024
NewsVoir
New Delhi [India], September 2: 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 Disease 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."
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.
Rare Disease 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.
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