The 57thannual conference of Indian Academy of Pediatrics(IAP) titled ‘Pedicon-2020’, was held in Indore from 9th to the 12th January. At the inaugural event, Dr. Bakul Parekh, President, IAP announced that Progeria, a rare disease will be one of the focus area for 2020 – 2021. One of the identified child Aaditya Sahu was called as a special guest for the inaugural function.
Progeria, is a rare, fatal genetic condition characterized by the appearance of accelerated ageing in children. Children with Progeria die of heart disease at an average age of 14 years.
Addressing the IAP through a video link was Dr. Leslie Gordon, Co-Founder & Medical Director, Progeria Research Foundation (PRF), USA. Dr. Gordonexplained about the clinical signs of Progeria and the services provided by the PRF including Genetic testing, treatment guidelines etc. Dr. Gordon appealed to the Paediatrician community to help identify more children with Progeria so that they can get access to treatment and healthcare guidelines that can give them longer, more active lives.
The Progeria Research Foundation is the only organization in the world dedicated to discovering treatments and the cure for children with Progeria. They run a campaign in India called ‘Find the Children – 60 in India with Progeria’ to create awareness among the general public and healthcare providers, in order to locate and assist children with this rare and fatal rapid aging condition.
Speaking at the event, Dr Bakul Parekh added that there are 18 kids identified across various parts of India and the Paediatrician community will be ing this cause to help spread awareness through various activities over the year.