@kdvsfoundation
2023 Kool Kampaign
2023 Kool Kampaign
Thank you for your interest in Koolen-de Vries Syndrome (KdVS). You are most likely receiving this because KdVS has impacted someone in your life and you are motivate...
Rare Epilepsy Partnership Award
Rare Epilepsy Partnership Award
For Immediate Release April 11, 2023 The Koolen-de Vries Syndrome Foundation selected for the Rare Epilepsy Partnership Award WILMINGTON, N.C. – The Koolen-de Vries Syndrome (KdVS) Foundation has been awarded […]
KdVS Patient Advocacy Summit Fundraising Shop | Official Merchandise | Bonfire
KdVS Patient Advocacy Summit Fundraising Shop | Official Merchandise | Bonfire
All proceeds go to funding the KdVS Patient Advocacy Summit
Welcome! You are invited to join a meeting: Newly Diagnosed Meet and Greet. After registering, you will receive a confirmation email about joining the meeting.
Welcome! You are invited to join a meeting: Newly Diagnosed Meet and Greet. After registering, you will receive a confirmation email about joining the meeting.
Donate
Donate
Commercial!
Commercial!
Research Paper: Speech and Language in KDVS
Research Paper: Speech and Language in KDVS
Signup 1 - Contact Registry
Signup 1 - Contact Registry
Koolen-de Vries Syndrome Foundation's mission revolves around Awareness, Education and Research. Learn more about the syndrome, research and upcoming events
Signup 2 - CRID
Signup 2 - CRID
Signup 3 - Rare-X
Signup 3 - Rare-X
Signup 4 - Ocular Study
Signup 4 - Ocular Study
Signup 5 - Speech tracker
Signup 5 - Speech tracker
Signup 6 - FaceMatch
Signup 6 - FaceMatch
Rare-X Registry
Rare-X Registry
KdVS Patient Advocacy Summit
KdVS Patient Advocacy Summit
Volunteer!
Volunteer!
KdVS Foundation Contact Registry
KdVS Foundation Contact Registry
Register your location to help us track the KdVS world community. Your registration helps us connect new families to others in their geographic location.
Research Opportunities
Research Opportunities
KdVS Ophthalmic Questionnaire
KdVS Ophthalmic Questionnaire
This questionnaire is designed to gather information about ocular manifestations in Koolen-de Vries Syndrome as part of a study in this topic. The survey is voluntary and completely anonymous. By participating in this questionnaire, you are agreeing to participate in this study. All participants are invited to share ophthalmic data in addition to the ocular questionnaire. Such data include ophthalmic exams, doctor visit summaries, test results, clinical photographs (can be limited to the ocular region), and data regarding the type of the genetic variant (the latter will be shared with GenIDA). Data can be sent to Dr. Landau at: LandauPrat.Daphna@sheba.health.gov.il. All information will be used in a de-identifying way, to ensure patient confidentiality. Thank you for participating, we highly appreciate your input. ** All questions apply to your child affected by the syndrome **
Speech Tracker Study Update from Angela Morgan Webinar
Speech Tracker Study Update from Angela Morgan Webinar
Share Your Rare Disease Story - EveryLife Foundation for Rare Diseases
Share Your Rare Disease Story - EveryLife Foundation for Rare Diseases
A Mama's Heart - Showing the World Differences are Worth Celebrating - Koolen-de Vries Syndrome Foundation | KDVS
A Mama's Heart - Showing the World Differences are Worth Celebrating - Koolen-de Vries Syndrome Foundation | KDVS
Board of Directors
Board of Directors
Partnership to Expand Effective Gene Therapies for Rare Diseases
Partnership to Expand Effective Gene Therapies for Rare Diseases
Koolen-de Vries Syndrome - Child Neurology Foundation
Koolen-de Vries Syndrome - Child Neurology Foundation
KdVS Connect – Grandparents Support Group
KdVS Connect – Grandparents Support Group
KdVS Connect – Emotional Support
KdVS Connect – Emotional Support
Koolen-de Vries Syndrome Foundation
Koolen-de Vries Syndrome Foundation
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