WHIM syndrome resources for you
There are a variety of resources and programs for WHIM syndrome, whether you want to learn more about it, are seeking a diagnosis, or are living with the condition.
No-Cost Genetic Testing
No-cost genetic testing through Probably Genetic is sponsored by X4 and is available for eligible people with immune deficiencies. You can order a test yourself through the mail to take at home using a simple cheek swab.
Learn more about no-cost testing through Probably Genetic and take a step toward finding answers here.
Video Library
Browse our collection and hear from other people who have navigated their own WHIM syndrome journeys in a quest for answers.
Courtney
Courtney talks about her challenges with treating her infections and how a diagnosis changed everything for her.
Kirsty
Kirsty discusses what it meant to finally put a name to her puzzling condition.
Leanne
Leanne shares how her history of warts helped her healthcare provider to suspect WHIM syndrome.
Gaby and Willow
Sisters Gaby and Willow talk about how a genetic test answered a lifelong mystery.
Downloadable Resources
If you suspect WHIM syndrome
Patient Education Guide
A fact sheet to help you better understand WHIM syndrome and how it is diagnosed
Doctor Discussion Guide
This guide can help you prepare to talk to your healthcare provider about WHIM syndrome
10 Warning Signs of WHIM
A fact sheet covering common symptoms of WHIM syndrome for you and your healthcare provider to review
If you have WHIM syndrome
Tips for Lowering Infection Risks
Tips and Resources
Caring for Someone With WHIM Syndrome
Building a Care Team
Get involved in the community
Living with a rare immune deficiency is challenging. It can be helpful to connect with others for support and resources.
Community-based support and advocacy groups for people with immunodeficiencies, rare diseases, and even some specifically for WHIM syndrome are available. Connecting with others within these groups can help you discover new resources and find a sense of community with others facing similar health challenges.
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)
International not-for-profit organization that advocates for PI 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)
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
Not-for-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally.
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An X4 Nurse Educator* who specializes in WHIM syndrome can provide helpful resources to you and your family.
*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, you should contact your healthcare provider.