Families

By uniting families and sharing stories, newly diagnosed families can connect, learn, and feel less alone.

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Help families get connected, informed, and supported.

The Natural History Study and donor support both play an important role in expanding knowledge, strengthening community, and moving research forward.

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Register and Participate in the Natural History Study

Online Communities

Shared experiences help families navigate the unknown with more confidence. Families in the JdVS community continue to offer support, encouragement, and practical insight for day-to-day life after diagnosis.

The foundation's social spaces are a strong starting point for newly diagnosed families, extended family members, and supporters who want to stay connected and learn from one another.

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Jansen de Vries Syndrome Facebook Page

Virtual Meet-Ups

Space to share practical knowledge, encouragement, and the experience of life with JdVS.

Peer-to-Peer

JdVS Champions can connect with others who understand their experience.

Siblings

A welcoming connection point for siblings of people with JdVS.

Parents & Caregivers

Families and caregivers can share questions, resources, and support.

View Community Connections updates

Stay connected

Private family conversations

The foundation also maintains private spaces for families to connect, including a family Facebook group and WhatsApp thread. Access is shared directly with eligible community members to help keep these conversations private and supportive.

Ask to join the private community

JdVS Uplift

JdVS Uplift provides practical support for meaningful interests, opportunities, and everyday family needs. Funding cycles and application availability are confirmed by the foundation.

Learn about JdVS Uplift

Stories That Inspire

Every family story helps another family feel seen, understood, and hopeful.