Resources

Chronic Neutropenia and Genetic Testing Resources

Chronic Neutropenia resources

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

Peer Support Program
Clinical Trial Webinar
Neutropenia resources, including a handbook, emergency room card and other disease information
Severe Chronic Neutropenia International Registry (SCNIR)

International non-profit that represents people with primary immunodeficiencies

Information and videos about PIDs
FAQs about COVID-19 and PIDs

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
Information about neutropenia

International non-profit that represents people with primary immunodeficiencies

Detailed written report about severe chronic neutropenia
Patient and Caregiver Resource Center

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

Chronic Neutropenia and genetic testing

Genetic testing and clinical studies (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 result in a treatment change or help identify what clinical studies may be available for them.

Educational site about genetic testing sponsored by X4 Pharmaceuticals

Genetic testing information and resources, including free genetic testing for people with primary immunodeficiencies, including neutropenia

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

Information for a genetic test that looks at genes known to cause PIDs, including those causing neutropenia

Clinical research resources

A non-profit organization that strives to educate and inform patients, professionals, and the public about clinical research

General Clinical Research Overview video that explains the basics about participating in a clinical trial
Gift of Participation: Making Informed Decisions About Volunteering for a Clinical Trial podcast that discusses crucial information on what to expect and questions to ask
Should I Participate? List of questions to ask the study team
Participant Bill of Rights Understand what your rights are before you decide to join
What is a Placebo? Explains what a placebo is and why it is sometimes used in clinical research

The U.S. agency responsible for protecting public health by ensuring the safety, efficacy, and security of human drugs, biological products, medical devices and more

Clinical Trials: What Patients Need to Know is a hub of information produced by the federal government for patients and families about clinical studies, informed consent, diversity in studies, and more.

A global non-profit advocacy organization for individuals and families fighting rare and genetic diseases

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

The U.S. medical research agency responsible for supporting scientific studies that turn discovery into health

Children and Clinical Trials is a comprehensive resource for parents that covers what to expect, benefits and risks and safety
Glossary of common clinical research terms
Frequently Asked Questions for people who want to learn more about clinical trials

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