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)

• IDF Patient & Family Handbook for information on living with PID
• Assistance with finding a doctor
• Advice about insurance, education, and employment
• WHIM Education Session Q&A Webinar
• Rare of the Rare Quick Clip: WHIM Syndrome

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

• Online community
• Extensive list of resources
• List of global patient organizations
• Roots and Wings program for children with a life-threatening primary immunodeficiency

National Neutropenia Network (NNN)

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

• Peer Support Program 
• Clinical Trials 101 Webinar
• Genetic Testing 101 Webinar
• Neutropenia resources, including a handbook, emergency room card and other disease informationSevere Chronic Neutropenia International Registry (SCNIR)
• PATH4WARD Genetic Testing Program Webinar

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

• Detailed written report about WHIM syndrome
• Video about WHIM syndrome
• Patient and Caregiver Resource Center