The Progeria Research Foundation (PRF - www.progeriaresearch.org), the organisation dedicated to discovering treatments and the cure for children with Progeria, announced the launch of ‘Find the Children - 10 in Bangladesh with Progeria’ campaign recently. 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 ageing condition.
Progeria is a rare, fatal genetic condition characterised by the appearance of accelerated ageing in children. Children with Progeria die of heart disease at an average age of 14 years.
Other symptoms of Progeria include stiffness of joints and hip dislocation, growth failure, loss of body fat and hair, and aged-looking skin that gives children with Progeria a unique and similar appearance, despite differences in ethnic backgrounds.
Today, experts estimate there are approximately 350-400 children living with Progeria worldwide, but only 161 children are identified by the Foundation as of October, 2019. Thus, approximately 200 children remain undiagnosed. Statistically, about 10 of the unknown children live in Bangladesh — untreated and in need of help. Over the past years, 3 children have been identified in Bangladesh.
PRF has developed programs and services to aid those around the world affected by Progeria, including diagnosis and treatment recommendations, so the children may have a better quality of life. This includes access to lonafarnib, which has been shown to give the children stronger hearts and longer lives. Lonafarnib is currently available to qualifying children through the ongoing PRF-funded clinical drug trial taking place at Boston Children’s Hospital in Boston, Massachusetts, U.S.
If you see or know of a child who may have Progeria, please contact The Progeria Research Foundation at firstname.lastname@example.org.