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.

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.  

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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 Noah

Noah’s Story Over Noah’s first 4.5 months his mother Nicole spent countless hours and sleepless nights contemplating the cause of the myriad of symptoms that he was having. The twins were born at 37 weeks and 2 days and Noah did not require any time in the NICU. Over the next several weeks to months…

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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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Smiling kid looking at camera

Meet Daniel

About Daniel Daniel is 11 years old. He lives with his dad, mom, and older sister. He loves to see his grandmother Lena every day 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…

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