Support
By uniting families and sharing stories we support newly diagnosed families looking to connect with others. Creating community together, we will look to each others’ shared experiences to help us navigate this uncharted territory.
Resources
Connect with providers who have treated JdVS individuals, learn what works and share success stories. Hear from a variety of specialists who have a unique understanding of how JdVS individuals learn best.
Research
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.
Advocacy
Putting Jansen de Vries Syndrome on the map. Connecting researchers, uniting families and spreading the word we work tirelessly to increase awareness about JdVS.
Featured Resources
Resources from experts and medical professionals at your fingertips.
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Online Communities
Together climbing mountains.
Stories that inspire
You are not alone - learn more about the families and children currently living with Jansen de Vries Syndrome.