26 Mar

2018 – Australian KdVS Family Gathering

Australian KdVS Family Gathering Where: Novotel Twin Waters Resort, Sunshine Coast – Queensland, Australia. Click here to view resort website. When: October 11th – 14th 2018 All enquiries to Andrea Smith Phone: +61 407 675 630 […]

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8 Aug

Following her Heart

With 50-50 odds that her child may also be diagnosed with Koolen-de Vries Syndrome, England’s Lisa Collins pursued her dream of being a mom.

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14 Jul

2017 KdVS Drug Therapy Research Update

Location: 2017 Koolen-de Vries Syndrome Patient Advocacy Summit Date: July 14, 2017 Katrin Linda, a PhD student researching at Radboud University Nijmegen, spoke about Koolen-de Vries Syndrome cellular and molecular […]

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13 Jul

2017 – Patient Advocacy Summit – Memphis, Tennessee

Memphis, Tennessee July 13 – 15, 2017 The planning for the 2017 Koolen-de Vries Syndrome Patient Advocacy Summit is underway. The event will take place on July 13-15, 2017 in […]

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30 Sep

2016 – Sept 30-October 2 – KdVS/Unique Study Weekend

Friday, September 30: Hotel check-in, informal evening with families, doctors and professionals. Evening meal provided through funding. Saturday, October 1: Breakfast (included with room). Morning – Q&A with Dr. Koolen […]

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7 Aug

Check out this awesome video of Sam’s involvement as a volunteer for The Friendship Circle of Central Jersey

Sam, who is living with Koolen-de Vries Syndrome, is such an uplifting and inspiring young man! The Friendship Circle is dedicated to creating a supportive community for special needs children, […]

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7 Aug

Akron Children’s Hospital tells Miranda’s Story

Kool Kid Miranda’s story was featured on Akron Children’s Hospital’s website, where they discuss their “little fighter” being one of the rarest of the rare. Check out her story here.

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7 Aug

Van Berg and his mother Eugenia Kim featured in a video series by the Youth Transitions Collaborative.

We are pleased to share the following video featuring Van Berg and his mother, Eugenia Kim. Van is 26 years old and was diagnosed with Koolen-de Vries Syndrome in 2007. […]

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7 Aug

Hayley’s Journey from Special Olympics to Carolina Cup

Check out this inspiring article about Hayley, who has Koolen-de Vries Syndrome and her Paddle boarding journey.

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7 Aug

Kool Kid Colby demonstrating his communication device.

Kool Kid Colby Tiberg demonstrates how he used his communication device in the classroom.

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