PXE International promotes research driven by, and centered on, people affected by PXE. This research community provides discussion forums for PXEers and researchers to brainstorm, collaborate, and develop studies to better understand the effect of nutrition, diet, and exercise on PXE.
Genetic Alliance is one of the world’s leading nonprofit health advocacy organizations. Its network includes more than 1,200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations. The network is a dynamic and growing open space for shared resources, creative tools, and innovative programs.
iCureCeliac is an online patient-powered research network created by Celiac Disease Foundation through a grant from the Patient Centered Outcomes Research Institute (PCORI). Its purpose is to enhance and accelerate research to better understand and ultimately cure celiac disease.
JS-LIFE is a database designed and supported by the Joubert Syndrome and Related Disorders Foundation (JSRDF) to advance research on the health and well-being of people with Joubert Syndrome. We invite you to collaborate with JS-LIFE participants and their families, disease advocates, medical researchers, and healthcare providers to design a research study to address important issues for people living with Joubert Syndrome. The research study will use information collected and shared in the JS-LIFE database.