To coincide with a new Progeria clinical trial, the campaign to locate more children across the globe living with the rare and fatal rapid-ageing condition has begun.
The search is timely, as approximately 40 children from around the world travel to Boston, Massachusetts, in the United States over the next few months to take part in the Triple Drug Trial, the latest clinical trial to test potential treatments for Progeria.
Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS) is a rare, fatal genetic condition characterized by the appearance of accelerated ageing in children. Symptoms include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, and cardiovascular (heart) disease, among others.
“Our success is a testament to the power of global collaboration. We now know that through our continued global efforts, we can find even more children with Progeria to provide them with unique and essential medical services and care, and significantly further medical research to develop treatments and a cure,” said Audrey Gordon, President and Executive Director, PRF.
When the Find the Other 150 campaign originally launched in 2009, only 54 children in 30 countries living with Progeria had been identified. In less than four years, the campaign has helped to:
- Find 50 more children from an additional seven countries on five continents
- Increase by 93 percent the number of known children with Progeria in 2013 compared to 2009
The children found now have the chance to enter potentially life-saving clinical drug trials.
“We need to continue to find as many children as we can,” said Dr. Leslie B. Gordon, Medical Director of PRF.
“We now know the gene that causes Progeria and just last September announced the results of our first clinical trial and its success in slowing the progression of Progeria. With the expansion of the Triple Drug Trial and the tools we have to treat it, it’s time to find the others worldwide living with Progeria.”