Community and Care Resources

Community and Care Resources

WHIM Syndrome Community

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

Global Genes

  • Free 12-lesson course for patients with rare diseases to learn more about clinical research and drug development

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

  • Webinar about WHIM syndrome
  • Leaflet that provides a deep overview of WHIM syndrome
  • FAQs about COVID-19 and PIDs

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

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


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

Diagnosis Resources


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


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. and Canada with the potential for expansion into other countries where permitted by local rules and regulations
  • Test order form available for download or complete online

Resources for Healthcare Professionals

*For U.S. Healthcare Professionals only

Visit What If It’s WHIM? to learn more

Questions to Ask Your Doctor

Living with WHIM Resources