SRCC Children’s Hospital managed by Narayana Health launched an NF Parents Support Group in collaboration with Bharat NF Foundation. With this initiative, the hospital aims to provide comprehensive care for children diagnosed with Neurofibromatosis Type 1 (NF1).
Neurofibromatosis Type 1 (NF1), also known as Von Recklinghausen disease, is a rare genetic disorder affecting the nervous system, causing tumours to form on nerves throughout the body. Affecting approximately 1 in 3,000 people worldwide, NF1 is usually diagnosed in childhood, with symptoms often appearing in infancy or early childhood. There is currently no cure for NF1, and treatment focuses on managing symptoms and complications throughout a patient’s life.
SRCC Children’s Hospital provides active CSR support from a Swiss multinational, Cotecna India at its specialised Neurofibromatosis clinic.
The newly launched NF Parents Support Group, in collaboration with Bharat NF Foundation, aims to provide emotional and practical assistance to families navigating the complexities of NF1.
The NF Parents Support Group will offer peer support, educational resources, and advocacy, creating a stronger and more informed community. SRCC Children’s Hospital approach aims to ensure that all necessary treatments are available under one roof, recognising that effective management of NF1 requires coordinated and multi-disciplinary care.