The Jansen de Vries Syndrome Foundation

Global Genes Global Advocacy Alliance member focused on rare disease support, education, advocacy, or research. The Jansen de Vries Syndrome Foundation is a non-profit organization with the mission of providing support and a sense of community to families touched by a PPM1D diagnosis. We are focused on providing education and resources to both families and medical professionals. Our goal is to raise awareness about this rare genetic condition and unite families, researchers, and medical professionals through the facilitation of a patient registry program. Through fundraising and grant efforts, we will work to provide researchers the resources necessary to gain a better understanding of the PPM1D mutation and develop potential treatments and therapies to ultimately improve the lives of those living with this rare genetic condition. Directory information only; not medical advice, legal advice, or endorsement. Services and eligibility should be confirmed with the organization.