Healthcare Professional Resources:
Please note: The gamunex.com website is intended for US residents, however, we have included some links to health care professional resources, available in English, which originate outside the US, as they have generously been made available online as a global resource for those involved in the treatment of immune disorders.

Primary Immune Deficiency (PI):

• Immune Deficiency Foundation (IDF) - Patient and physician resource for the research and education of Primary Immune Deficiency diseases.



• The Jeffrey Modell Foundation: National Resource Center for Primary Immune Deficiency - Patient and physician resource, including a patient message board, a physician research library, and CME courses, for the research and education of Primary Immunodeficiency.

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General:

• American Association of Immunologists



• CliniWeb International (Oregon Health and Science University) - CliniWeb provides access to biomedical information, primarily that which would be of use to health care profession students and practitioners.



• European Society for Immunodeficiencies (ESID) - ESID welcomes members from all over the world. It is only through a global presence that ESID will continue to be successful.



• Karolinska Institute - provides medical university library links to medical journal articles about immunologic diseases.



• National Organization for Rare Disorders

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Idiopathic thrombocytopenic purpura (ITP):

• Diagnosis and Treatment of Idiopathic Thrombocytopenic Purpura: Recommendations of the American Society of Hematology Annals of Internal Medicine 15 February 1997. 126:319-326.



• Idiopathic Thrombocytopenic Purpura article - Physician resource for information on diagnosis and treatment of Idiopathic Thrombocytopenic Purpura; includes an extensive bibliography.

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Patient Resources:
Please note: The gamunex.com website is intended for US residents, however, we have included some links to patient and family resources, available in English, which originate outside the US, as they have generously been made available online as a global resource for everyone affected by immune deficiency diseases.

Primary Immune Deficiency (PI):

• Immune Deficiency Foundation (IDF) - A national voluntary health organization, the IDF is a non-profit organization dedicated to improving the diagnosis and treatment of PI through research and education. The goal of IDF is to help patients with PI and their families to live a healthy and productive life. It also strives for a broader understanding of PI through education and outreach efforts to patients and the medical community.
  
  Worth taking a look:
  IDF produces a variety of educational materials for patients and health professionals. All publications are free of charge and can be printed from their web site.
  
  Check out the Patient and Family Handbook, a comprehensive resource for PI patients and their families.
  
  
• The Jeffrey Modell Foundation, National Resource Center for Primary Immune Deficiency - A non-profit research foundation devoted to PI. The Foundation is dedicated to the early and precise diagnosis, meaningful treatment, and ultimate cure of Primary Immunodeficiencies.
  
  Worth taking a look at:
  The site offers access to consumer publications, community & individual support through K.I.D.'s (Kids with Immune Deficiencies) Days for patients and families, educational workshops and more.
  
  
• Michigan Immunodeficiency Foundation - This organization seeks to improve the quality of life of Michigan residents who suffer from primary immune deficiency diseases by increasing patient and physician education and awareness, raising and providing funds for research, and assisting patients and family members dealing with primary immunodeficiency.
  
  
• International Patient Organization for Primary Immunodeficiencies (IPOPI) - IPOPI is an international organization whose members are national patient organizations for PI. It is uniting the experiences, expertise, resources and influence of its members to support the commitment for worldwide improvement of the care and treatment of patients with PI.
  
  Worth taking a look at:
  Check out the FORUM section of the web site. The postings are recent and come straight from patients and families. It's a good place to find support and connection.
  
  
• Canadian Immunodeficiencies Patient Organization - Canadian Immunodeficiencies Patient Organization (CIPO) - CIPO is a national organization of PI patients and their families. Its purpose is to achieve nationwide improvement in the care and treatment of patients with PI.



• Children's Immune Deficiency Foundation - forum for children with PI, including games and a message board.



• European Society for Immunodeficiencies (ESID) - A non-profit organization that promotes various aspects related to PI. ESID's main objective is to facilitate the exchange of ideas and information among doctors, nurses, biomedical investigators, patients and their families concerned with PI.
  
  Worth taking a look at:
  ESID has compiled a consensus of diagnostic criteria for PI to establish simple, objective and clear guidelines for physicians and scientists.



• ICON Health Books - Official Parent's Sourcebook on PI, available in paperback and in e-book form (with imbedded hyperlinks).



• KIDS Foundation of New Zealand Inc - patient and family support and PI education resource focusing on children.



• National Institute of Allergy and Infectious Diseases (NIAID) Primary Immune Deficiency Diseases page - fact sheets, brochures and news releases related to PI. The Primary Immune Deficiency Fact Sheet (NIAID Website) contains information related to primary immune deficiencies, immune defects and related blood disorders.



• National Primary Immunodeficiency Resource Center (NPI) - NPI Resource Center is a central resource dedicated to PI. Its mission is to facilitate understanding for researchers, scientists, physicians, government, industry, patients and their families. The site is easy to navigate and encompasses sections dedicated to patient and professional medical information.
  
  Worth taking a look at:
  Under the PATIENT INFORMATION navigation, check out the 10 Warning Signs of Primary Immunodeficiency.
  
  
• Pediatric Primary Immune Deficiencies - A look at PI as it relates specifically to children. This site focuses on the education of PI in children and their particular situations.



• Primary Immunodeficiency Association - patient and family support and education resource.



• Primary Immunodeficiency booklet - from the National Institute of Child Health and Human Development (NICHD) (part of the National Institutes of Health).



• Primary Immunodeficiency Network of South Africa - patient and family support and education resource.



• Primary Immunodeficiency disease information - provided by Auckland Allergy Clinic in New Zealand.

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General:

• Immune Central- An informative, educational and in-depth look at the Immune system. Designed for anyone interested in learning more about how our Immune systems work, what diseases are associated with it, and how to boost your Immune system.
  
  Worth taking a look at:
  Immune system in Depth
  Part of the Immune system Series, this guide to the Immune system is a comprehensive assessment of the Immune system and the role it plays in human health. Although written at a somewhat advanced education level, the guide does provide a glossary of terms and explanations.
  
  
• Understanding the Immune system - A National Cancer Institute "Science Behind the News" educational resource about the Immune system.



• Children`s Allergy and Immunology Program, Children's Hospital Boston - As a major pediatric referral center, Children's Hospital Boston's mission is to provide the highest quality health care. In support of this mission, Children's strives to be the leading source of research and discovery, seeking new approaches to the prevention, diagnosis and treatment of childhood diseases.



• National Jewish Medical and Research Center- National Jewish Medical and Research Center is known worldwide for treatment of patients with respiratory, immune and allergic disorders, and for groundbreaking medical research. Founded in 1899 as a nonsectarian, nonprofit hospital for tuberculosis (TB) patients, National Jewish remains the only facility in the world dedicated exclusively to these disorders.
  
  Worth taking a look at:
  Medical facts on immune deficiency.



• Severe Combined Immune Deficiency Website - Barb Ballard, parent of a child diagnosed with SCID, started this web site as a self-help support tool and resource guide for patients and families afflicted with SCID. The majority of the information links to information outside of the website.
  
  
• US Department of Health and Human Services, National Institute for Health (NIH) - National Institute of Allergy and Infectious Diseases (NIAID) is part of the National Institutes of Health, which is the steward of medical and behavioral research for the nation. It is an Agency under the U.S. Department of Health and Human Services.
  
  Worth taking a look:
  Check out the fact sheet about PI and the additional information about immune defects and related blood disorders.
  
  

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Idiopathic thrombocytopenic purpura (ITP):

• Chronic Immune Thrombocytopenic Purpura Guide for Patients - a patient resource for adults with Chronic ITP, provided by the Scripps Research Institute.



• In-depth look at ITP - eMedicine - An in-depth look at ITP by Michael A Silverman, MD, instructor, Department of Emergency Medicine, Johns Hopkins Bayview Medical Center, Saint Agnes Healthcare.
  
  Worth taking a look:
  Statistics provided for the frequency of ITP, the mortality/morbidity associated with the disease, and sex and age of patients.
  
  
• ITP Support Association - ITP patient and family education and support resource.



• National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) - ITP patient education Web site (part of the National Institutes of Health (NIH).



• Platelet Disorder Support Association - patient support Web site with information about ITP and other platelet disorders.

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