Mumbai, March 7: More than 100 children with rare diseases and their parents participated in a special Patient Support Group Program organised by Bai Jerbai Wadia Hospital for Children to mark Rare Disease Day last week, where specialists from 10 pediatric departments conducted awareness sessions and interactive discussions to help families understand diagnosis, treatment and long-term care.
Families and specialists come together for awareness program
The event brought together children affected by 10 different rare diseases, providing a platform for families to interact with doctors, share experiences and receive expert guidance.
The program was attended by Armida Fernandez, Padma Shri awardee and renowned neonatologist, as Chief Guest, along with Medical Director Sudha Rao and transplant specialist Pradnya Bendre.
Experts discuss multiple rare diseases
Specialists from Pediatric Cardiology spoke about cardiomyopathy, while immunology experts discussed agammaglobulinemia. The genetics department explained inborn errors of metabolism, and Pediatric Nephrology addressed atypical hemolytic uremic syndrome.
Pulmonology experts interacted with children suffering from cystic fibrosis, while the Hematology-Oncology and Bone Marrow Transplant team discussed Fanconi anemia.
Sessions were also held on congenital hyperinsulinism, genetic epilepsy syndromes, tyrosinemia and Wilson disease, including discussions with children who had undergone liver transplants.
Each session focused on early diagnosis, treatment options, regular follow-ups and long-term disease management.
Hospital highlights growing burden of rare diseases
Dr Sudha Rao said rare diseases affect nearly 1 in 10,000 to 200,000 children, and over 7,000 rare diseases have been identified globally. She explained that congenital hyperinsulinism occurs in about 1 in 100,000 children, where babies are born with dangerously low blood sugar due to excess insulin production and require lifelong monitoring, medication and injections.
Wadia hospital offers specialised treatment and long-term care
She added that the hospital serves as a major tertiary referral centre for rare diseases in children and provides comprehensive care ranging from early diagnosis and molecular genetic testing to advanced treatment and long-term follow-up, supported by bone marrow, kidney and liver transplant programs.
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CEO Minnie Bodhanwala said the hospital remains committed to strengthening infrastructure and specialist services so that children with rare diseases receive the best possible care and support.
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