Resources for Patient and Families


Get a Medical Alert Bracelet

Medical Alert provides comprehensive at-home and on-the-go medical alert systems to keep you safe and independent while living in your own home and community.

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Immune Deficiency Foundation - IDF School Guide

A reference for parents and school personnel containing key medical points about primary immunodeficiency diseases and associated special needs, legal rights, and resource referrals.

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Immune Deficiency Foundation Patient & Family Handbook for Primary Immunodeficiency Diseases, 6th Edition

The IDF Patient & Family Handbook for Primary Immunodeficiency Diseases, 6th Edition contains comprehensive information about the diagnosis and treatment of primary immunodeficiency diseases and life management.

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International Patient Organisation for Primary Immunodeficiencies - IPOPI Forums

IPOPI is a non-profit international organisation and advocate for primary immunodeficiency (PID) patients worldwide working in collaboration with patients, doctors, politicians, regulators, pharmaceutical industry and other relevant stakeholders.

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Mayo Clinic Primary Immunodeficiency Article

The Mayo Clinic is a nonprofit organization committed to clinical practice, education and research, providing expert, whole-person care to everyone who needs healing. Read their article on Primary Immunodeficiency to learn more about the disease.

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MedLine Plus

Find consumer-friendly information about the effects of genetic variation on human health.

Genetics Immune System and Disorders

National Institute of Allergy and Infectious Diseases (NIAID)

NIAID conducts and supports basic and applied research to better understand, treat, and ultimately prevent infectious, immunologic, and allergic diseases. They offer a guide to understanding Primary Immune Deficiency Diseases (PIDDs).


National Organization for Rare Disorders (NORD) Rare Disease Information

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

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NIH Office of Rare Diseases Research, Genetic and Rare Diseases Information Center (GARD)

The Genetic and Rare Diseases Information Center (GARD), a program of the National Center for Advancing Translational Sciences (NCATS), is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.

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United States Department of Health and Human Services Office for Human Research Protections

The Office for Human Research Protections (OHRP) provides leadership in the protection of the rights, welfare, and wellbeing of human subjects involved in research conducted or supported by the U.S. Department of Health and Human Services (HHS).

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What is SCID?

SCID Angels for Life Foundation answers the question, What is SCID?, and recommends additional resources. Learn More


IDF Friends

A private, supportive online community created by the Immune Deficiency Foundation (IDF) and designed for everyone in the PI Community. Members can share stories, discuss symptoms, get advice, and connect with others from across the country in similar situations.

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IDF Patient & Family Handbook for Primary Immunodeficiency Diseases: Wiskott-Aldrich Symdrome

A comprehensive look at Wiskott-Aldrich Symdrome by Hans Ochs, MD.

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International Patient Organisation for Primary Immunodeficiencies (IPOPI) - Wiskott-Aldrich Syndrome Handbook

A hand book exploring the diagnosis and treatment of Wiskott-Aldrich Syndrome available in English, Estonian, French, German, Greek, Portuguese, Romanian, Russian, and Spanish.

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Medline Plus: Wiskott-Aldrich Syndrome

Get an in-depth look at Wiskott-Aldrich Syndrome on the Medline Plus Genetics website.

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Patient Article, Wiskott-Aldrich Syndrome

Patient hosts clinical information that is written and reviewed by an extensive network of doctors and healthcare professionals.

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Swedish Information Center for Rare Diseases

The National Board of Health and Welfare is a Swedish government agency under the Ministry of Health and Social Affairs. View their guide on Wiskott-Aldrich Syndrome.

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The Wiskott-Aldrich Foundation

The Wiskott-Aldrich Foundation is a patient advocacy group offering genetic information and testing, access to medical supplies, and financial resources for families of patients being treated for Wiskott-Aldrich Syndrome.

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Wiskott-Aldrich Syndrome on Facebook

A private Facebook Group for the friends and family of patients diagnosed with Wiskott-Aldrich Syndrome.

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CGD Research Trust: Chronic Granulomatous Disorder: A Guide for Patients and Families

The CGD Society has developed a guide for patients and families to support people affected by Chronic Granulomatous Disorder.

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Jeffrey Modell Foundation Roots & Wings logo

Jeffrey Modell Foundation Roots & Wings

The “Roots & Wings” Program provides travel (the “Wings”) and related support (the “Roots”) for families who have to travel a great distance for children in need of a stem cell transplant, gene therapy, or other lifesaving treatments.

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