Welcome to the JdVS Community! Together we are stronger.

We strive to provide a safe and welcoming community where we can share our stories and support each other. There are many ways for you to connect and become involved within our organization! We are so glad to have you.

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tempImageKk8Mfa - Elizabeth Jacobs


Connect with our Community

JdVS has a public Facebook page to educate anyone and everyone about Jansen de Vries Syndrome.

We also have a private closed family support page that is for parents or primary caregivers of those diagnosed with Jansen de Vries.

We also offer for parents or primary caregivers a WhatsApp text thread where families can ask the group questions and share experiences.

JdVS Summit 2023

Join us this summer for our first community gathering!


Virtual Community Meet-Ups

JdVS Peer-to-Peer

Interested in connecting with others who share your diagnosis?

JdVS Siblings

Does your sibling have JdVS? Are you interested in connecting with other siblings who share your unique experience?

Parents/Care Givers

Are you looking to connect with other parents of children with JdVS?

Family Registry

Register with the JdVS Community

Over the past 4 years we have worked diligently to learn more about Jansen de Vries Syndrome.  We would not have come nearly as far without the help of our JdVS families.   This information is used to keep track of patients around the world and help doctors and researchers learn more.  You can register privately or choose to share your information with other families.  

JdVS Uplift: A Community Grant Program

The JdVS Foundation is proud to introduce a new opportunity for JdVS individuals and their families. This program is designed to help select applicants financially in reaching their full potential through academic, athletic, extracurricular, artistic and other enrichment activities that support the lives, interests and passions of individuals diagnosed with JdVS.

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Faces of JdVS: Who We Are

Click here to read personal stories provided by JdVS families.

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Meet Wells

About Wells Wells was born at thirty seven weeks to his mother, Rachel.  The pregnancy was mostly normal, except for excess amniotic fluid.  Healthy at birth, he was discharged after two days in the hospital.   At twelve weeks, Wells underwent surgery for three hernias.  Around three months, Wells was diagnosed with laryngomalacia (underdeveloped vocal cords) which…

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Meet Mollie

About Mollie: An answer after 42 years When Mollie and her family found out in February of 2021 that she has Jansen de Vries Syndrome, a 42-year mystery was solved. Prior to this unexpected news, her diagnosis was Cyclic Vomiting Syndrome (CVS) and undiagnosed global developmental delay.  Mollie was a year and a half old…

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Meet Daniel

About Daniel Daniel is 13 years old. He lives with his dad, mom, and older sister. He loves seeing his grandmother Lena daily and has many family members in South Africa and Australia. Early Years Daniel was born at term after an uncomplicated pregnancy. Still, his parents and the medical team knew right from the…

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