The Progeria Research Foundation is the global resource for Progeria research and education. Progeria is an ultra-rare condition. In order to better understand the pathology and natural course of the syndrome, we established an International Registry Program.
The Registry provides resources for the study of Progeria and maintains a centralized database on children with Progeria from around the world, while also serving to improve communication of ideas among researchers, to assure rapid distribution of any new information that may benefit patients and their families.
The Registry may be audited by governmental agencies, such as the US Food and Drug Administration, in situations such as drug development.
Your cooperation in registering and in helping to contribute information on children with Progeria to the Registry is greatly appreciated. If you are the parent, physician, or other representative of a child with Progeria, please fill out a Registry Form, and submit it to firstname.lastname@example.org.
Thank you in advance for participating in The Progeria Research Foundation International Registry Program.