Skip to main content

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.

Learn More

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.

Learn More

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.

Learn More

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.

Learn More

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.

Learn More

MedLine Plus

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

Genetics Immune System & 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.

Learn More

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.

Learn More

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 US Department of Health and Human Services (HHS).

Learn More

What is SCID?

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

Scholarships for SCID Patients and Families

Scholarships are offered to qualifying families within the US.

SCID Scholarships.

SCID Angels for Life on Facebook

A publicly accessible page with information and announcements of benefit to SCID patients, families and friends.

SCID is on Facebook.

SCID Angels for Life Private Facebook Group

A private, moderated, group where SCID Patients and Families from around the world come to share experiences, ask questions, learn from one another and develop friendships.

Learn more about SCID's Facebook group.

SCID Angels for Life Newsletter

Sign up to receive information on SCID Angels, SCID news, and SCID families all in your email. Families, health care providers, industry partners and all of our friends are invited to sign up.

SCID newsletter.


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.

Learn More

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

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

Learn More

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

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

Learn More

Medline Plus: Wiskott-Aldrich Syndrome

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

Learn More

Patient Article, Wiskott-Aldrich Syndrome

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

Learn More

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.

Learn More

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.

Learn More

Wiskott-Aldrich Syndrome on Facebook

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

Learn More


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.

Learn More

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.

Learn More