Education Resources

X4 Nurse Educator*

A nurse educator who specializes in WHIM syndrome can help you and your family learn more about WHIM syndrome and your diagnostic options.

* X4 Nurse Educators are employees of X4 Pharmaceuticals and do not work under the direction of a healthcare professional; they do not offer medical or treatment-related advice. For treatment and medical questions, patients should contact their healthcare provider.

Patient Educational Guide

A fact sheet to help you better understand WHIM syndrome and how it is diagnosed.

WHIM Syndrome Community

Private Facebook group for people living with WHIM Syndrome. Search under Groups for Whim Syndrome Community

The Jeffrey Modell Foundation (JMF)

Not-for-profit organization devoted to early and precise diagnosis, meaningful treatments and ultimately cures for people with primary immunodeficiencies

The Immune Deficiency Foundation (IDF)

Not-for-profit patient advocacy organization that provides information and resources for people with primary immunodeficiencies (PIs)

International Patient Organization for Primary Immunodeficiencies (IPOPI)

IPOPI is an international not-for-profit organization that advocates for PID patients worldwide

National Neutropenia Network (NNN)

Not-for-profit organization that promotes awareness, education and research for patients and families with severe chronic neutropenia

National Organization for Rare Disorders (NORD)

A not-for-profit patient advocacy organization dedicated to improving the lives of people living with rare diseases and the organizations that serve them

Global Genes

Global Genes is a non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally.


RareConnect is a place where rare disease patients can connect with others globally.

Testing Resources

Probably Genetic No-Cost Genetic Testing

A program for eligible patients or family members with immune deficiencies, including WHIM syndrome, to directly order genetic testing at no cost.

  • Genetic counseling and family testing also available


  • Information and about genetic testing
  • Genetic testing resources, including free genetic testing for people with primary immunodeficiencies

Resources for Your Healthcare Provider

A disease educational website offering WHIM syndrome information and resources for your healthcare provider.


A no-cost genetic testing program, sponsored by X4 Pharmaceuticals in partnership with Invitae

  • Information about a genetic test that is only looking at certain genes known to cause chronic neutropenia and primary immunodeficiencies (PIs).
    • Samples can be taken at your home or doctor’s office and mailed back to Invitae
    • The program provides access to free post-test genetic counseling
    • Genetic testing is available in the U.S.
  • Test order form available for download or complete online

10 Warning Signs of WHIM Syndrome

A fact sheet covering common manifestations of WHIM syndrome for you and your healthcare provider to review.

Questions to Ask Your Doctor

Living with WHIM Resources