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


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


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

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

Diagnosis Resources

PATH4WARD

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

  • Information for a genetic test that looks at 407 genes known to cause PIDs, including those causing neutropenia
    • Saliva or blood 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

IDyourPID

Educational site about genetic testing sponsored by X4 Pharmaceuticals

Clinical Research Resources

The Center for Information and Study on Clinical Research Participation (CISCRP)


U.S. Food and Drug Administration (FDA)


Global Genes

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