• 31 May 2024
• Admin
• News Article

SRCC Children’s Hospital launches NF Parents Support Group for Neurofibromatosis

Narayana Health’s SRCC Children’s Hospital launches NF Parents Support Group for neurofibromatosis

Overview

SRCC Children’s Hospital managed by Narayana Health launched first-of-its-kind NF Parents Support Group in collaboration with Bharat NF Foundation. This initiative marks a significant advancement in the hospital’s mission to provide comprehensive care for children diagnosed with Neurofibromatosis Type 1 (NF1). 

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

• Recognizing the profound need of NF1 on families, SRCC Children’s Hospital managed by Narayana Health has been at the forefront with its specialized Neurofibromatosis Clinic with active CSR support from a Swiss multinational, Cotecna India Pvt Ltd. 
• The newly launched NF Parents Support Group, in collaboration with Bharat NF Foundation, aims to extend support beyond medical treatment, providing emotional and practical assistance to families navigating the complexities of NF1. 

From SRCC Children’s Hospital

Dr. Anaita Hegde, sr consultant paediatric neurology, SRCC Children’s Hospital, emphasized the importance of this initiative: “Our goal is to provide comprehensive, compassionate care to children battling NF1. The NF Parents Support Group will be a crucial resource for families, helping them connect, share experiences, and access necessary support. 

Words from Bharat NF Foundation

Dr. Sudhir K Gupta, founder of Bharat NF Foundation, expressed his enthusiasm on the collaboration stated “This collaboration with Narayana Health’s SRCC Children’s Hospital marks a significant step forward in supporting families affected by neurofibromatosis. We believe this initiative will greatly enhance the quality of life for these children and their families by providing them valuable information and support. 

What NF Parents Support Group will offer?

• The NF Parents Support Group will offer peer support, educational resources, and advocacy, creating a stronger and more informed community. 
• SRCC Children’s Hospital holistic approach ensures that all necessary treatments are available under one roof, recognizing that effective management of NF1 requires coordinated and multi-disciplinary care.