The Progeria Research Foundation, the only organization in the world dedicated to discovering treatments and the cure for children with Progeria, today announced the launch of ‘Find the Children – 10 in Bangladesh 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 Bangladesh 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 characterized by the appearance of accelerated ageing in children. Children with Progeria die of heart disease at an average age of 14 years — the same heart disease that affects millions of normal aging adults. 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.
Audrey Gordon, President and Executive Director of 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 recognize. Bangladesh is a country with nearly 165 million people. Statistically, this means we expect approximately ten children with Progeria are living there. We’re launching our Find the Children – 10 in Bangladesh with Progeria campaign to raise awareness and help us locate these special children throughout Bangladesh, to help provide them with the unique care they need. We can connect them with other families, provide treatment recommendations, give them an opportunity to join clinical treatment trials, and give them access to a drug that may improve their cardiovascular status and extend their lives.”
Audrey Gordon, President and Executive Director of PRF
Today, experts estimate there are approximately 350-400 children living with Progeria worldwide, but only 161 children are identified by The Progeria Research 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. People living in Bangladesh can help find more Bangladeshi children with Progeria so that PRF can provide the unique support they need.
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.
The Progeria Research Foundation has collaborated with MediaMedic Communications Pvt.Ltd. through its exclusive status as India partner in GLOBALHealthPR. In the past, MediaMedic helped find Nihal Bitla from Bhivandi, Mumbai, and several others, including children from Chhattisgarh, Bihar, and Madhya Pradesh.
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