The programme, developed by The Progeria Research Foundation (USA), aims to find and assist children living with the rare, fatal rapid-ageing condition
The Progeria Research Foundation (PRF) announced the launch of ‘Find the Children – 60 in India with Progeria’ campaign. The campaign is designed 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. The India search calls for the public’s help in finding undiagnosed children with Progeria, so they can have access to treatment and healthcare guidelines that can give them longer, more active lives.
Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS) is a rare, fatal genetic condition characterised by the appearance of accelerated ageing in children.
Audrey Gordon, President and Executive Director, PRF said, “In order to help the children, we have to find them. Locating and assisting them is the goal of our international ‘Find the Children’ campaign. Progeria is a very rare disease that many people don’t recognise. And in a vast, diverse, and multilingual country like India, many of these children come from smaller towns and remote villages; so this outreach is vital to finding them.”
“We have connected with over a dozen families of children with Progeria in India, and they have become part of the PRF International Progeria Registry, received treatment recommendations, and joined clinical treatment trials. Our goal is to provide these opportunities to every child with Progeria in India. Finding these children and their families is the essential first step to helping them,” said Dr Leslie B Gordon, Medical Director, PRF.