According to the American Academy of Professional Coders (AAPC), the 10th edition of the International Classification of Diseases (ICD-10) is a medical coding system designed by the World Health Organization (WHO) to catalog health conditions by similar disease that have more specific conditions listed under them, mapping complex diseases to broader morbidities.
Many countries now use national variations of ICD-10, each modified to align with their unique healthcare infrastructure.
The U.S. version of ICD-10, created by the Centers for Medicare & Medicaid Services (CMS) and the National Center for Health Statistics (NCHS), consists of two medical code sets — the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) and International Classification of Diseases, Tenth Revision, Procedure Coding System (ICD-10-PCS).
ICD-10-PCS is a classification system of medical codes used in hospital settings to report inpatient procedures.
ICD-10-CM is used for medical claim reporting in all healthcare settings and is a standardized classification system of diagnosis codes that represent conditions and diseases, related health problems, abnormal findings, signs and symptoms, injuries, external causes of injuries and diseases, and social circumstances.
For a medical provider to receive reimbursement for medical services, ICD-10-CM codes are required to be submitted to the payer. While CPT® codes depict the services provided to the patient, ICD-10-CM codes depict the patient’s diagnoses that justify the services as medically necessary.
Find more information here:
AAPC: https://www.aapc.com/resources/what-is-icd-10
CDC: https://www.cdc.gov/nchs/icd/icd-10/index.html
WHO: https://www.who.int/standards/classifications/classification-of-diseases
Why This Matters
Right now, there is no specific ICD-10 medical code for Koolen-de Vries Syndrome (KdVS). This makes it harder to:
-Track how many people have KdVS
-Advocate for better insurance coverage and services
-Advance research and awareness
Together, we can change that — but we need your help!
How You Can Help
We are asking KdVS families and supporters to email their providers and encourage them to support the creation of an ICD-10 code for KdVS. Every email strengthens our case and brings us closer to success.
We’ll share updates on how many families have taken action and keep everyone informed as we move forward. Every communication matters — and together, we can make a difference.
Take Action in 4 Easy Steps
1️⃣ Download the Draft Letter
📄 [Download Draft Letter] – This explains to your provider why a KdVS ICD-10 code is needed.
2️⃣Personalize Your Message
Add 1–2 sentences about how the lack of a code has affected your family (insurance delays, difficulty accessing care, medical record challenges, etc.).
3️⃣Send Your Email
Email your provider or care team directly: copy/paste or attach the letter.
4️⃣Spread the Word
-Share this page with other KdVS families
-Post on social media using our sample caption below
-Ask friends or healthcare connections to share, too
Email Subject line Examples:
- Support for ICD-10 Code for Koolen-de Vries Syndrome
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Take 5 Minutes to Help Get a KdVS ICD-10 Code
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Your Voice Can Make a Difference for KdVS Families
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ACT NOW: Help Secure an ICD-10 Code for Koolen-de Vries Syndrome
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Join Us in Advocating for Better Care for KdVS
Sample Social Media Caption & Graphic
Caption: “Our KdVS community is working to secure an official ICD-10 code — and we need your help!
Email your provider using this letter: [Insert link to email].
Together, we can make it easier for all KdVS families to access care and advance research.”Graphic:
Resources
📄Action Guide: [ KdVS_ICD10_Action_Guide]
📄Email Template: [KdVS ICD Template]
