30 Sep

2024 Family Carer of the Year

Meet Laura Egan, the WINNER in the Westmeath independent community and sports awards for the 2024 Family Carer of the Year award. When her daughter Alanna was diagnosed with Koolen-de […]

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16 Sep

KdVSF Connect – Get Excited for Summit!

Are you attending the Koolen-de Vries Syndrome Foundation’s Patient Advocacy Summit in Chicago? This special KdVSF Connect is a chance to ask any of your last-minute Summit questions!   The event […]

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16 Sep

KdVSF Connect – Newly Diagnosed Families

Join the KdVS Foundation for a Newly Diagnosed Families meeting open to any KdVS families diagnosed within the past 3 years)! We look forward to connecting and supporting you. Sunday, […]

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16 Sep

KdVSF Connect – Kool Meet Up

Join the KdVS Foundation for a Kool Meet Up open to all KdVS Individuals and their families! Join the zoom call to meet and greet new and old families alike. […]

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16 Sep

KdVSF Connect – Caregiver Emotional Support

Join the KdVS Foundation for a Caregiver Emotional Support meeting open to parents and caregivers of individuals diagnosed with KdVS! We look forward to connecting and supporting you. Sunday, 03/09/2025 […]

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31 Jan

Meet Tom Kelsall, an amazing cyclist

Tom Kelsall, a teenager diagnosed with Koolen-de Vries Syndrome and Type 1 diabetes, has an amazing and inspirational story to tell. Remember his name and cheer him on as he […]

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24 Sep

KdVS Foundation attends Global Genes Summit

Board Member Andy Speirs and his wife, Virginia, represented Koolen-de Vries Syndrome Foundation at the Global Genes Patient Advocacy Summit. They were able to network and make great contacts in […]

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