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WHIM syndrome resources

WHIM syndrome

WHIM Syndrome Community

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

Immune Deficiency Foundation (IDF)

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

International Patient Organisation for Primary Immunodeficiences (IPOPI)

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

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

WHIMSyndrome.com

Patient stories and resources for people living with WHIM syndrome

WHIM syndrome and genetics

As researchers and scientists make new discoveries about genetic mutations that cause certain diseases, diagnosis is getting more accurate and treatments more personalized. A personalized treatment means that doctors can provide the right medicine at the right dose at the right time to each individual patient. Still, more than 90% of the more than 7,000 rare diseases do not have approved treatments.

Genetic testing and clinical trials (research studies) help drive research and progress forward. Some people may get a genetic test for fun or because of curiosity. But for people living with a rare disease, genetic testing can provide answers that can change their treatment and help identify what clinical trials may be available for them.

IDyourPID

Educational site about genetic testing sponsored by X4 Pharmaceuticals

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
  • No-cost genetic counseling is available for people before genetic testing to understand the test, as well as after testing to help people understand their results
  • Download the PATH4WARD Program Report presented at the Clinical Immunology Society annual meeting.

Clinical research

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

U.S. Food & Drug Administration (FDA)

Global Genes

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

National Institutes of Health (NIH)

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