Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Primary Immunodeficiency (PI)
Idiopathic Thrombocytopenic Purpura (ITP)
General
Please note: The GAMUNEX.com Web site 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.
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Providing support and assistance to GBS/CIDP patients and their families and committed to increasing knowledge and awareness in both the public and professional communities, the Foundation provides print information and educational opportunities, sponsors worldwide meetings, lectures and support groups, hosts the biannual GBS/CIDP International Symposium, and encourages new findings by awarding research grants for further study and experimentation.
MedlinePlus will direct you to information to help answer health questions. MedlinePlus brings together authoritative information from the National Library of Medicine (NLM), the National Institutes of Health (NIH), and other government agencies and health-related organizations. Preformulated Medline searches are included in MedlinePlus and give easy access to medical journal articles. MedlinePlus also has extensive information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and the latest health news.
The mission of NINDS is to reduce the burden of neurological disease–a burden borne by every age group, by every segment of society, and by people all over the world. NINDS is the leading supporter of biomedical research on disorders of the brain and nervous system.
The mission of The Neuropathy Association is to help and heal people with peripheral neuropathy by providing neuropathy awareness, education, support, advocacy, and research.
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Primary Immunodeficiency (PI)
A national voluntary health organization, the IDF is a nonprofit 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 at:
IDF produces a variety of educational materials for patients and healthcare professionals. All publications are free of charge and can be printed from their Web site. IDF also sponsors local events such as patient meetings.
Check out the Patient and Family Handbook, a comprehensive resource for PI patients and their families.
The Jeffrey Modell Foundation is a nonprofit research foundation 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 and individual support through K.I.D.s (Kids with Immune Deficiencies) Days for patients and families, educational workshops, and more.
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.
IPOPI is an international organization whose members are national patient organizations for PI. It unites the experiences, expertise, resources, and influence of its members to support the commitment for worldwide improvement in 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 make connections.
Primary immune deficiency diseases page–fact sheets, brochures, and news releases related to PI. The Primary Immune Deficiency Fact Sheet contains information related to primary immune deficiencies, immune defects, and related blood disorders.
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Idiopathic Thrombocytopenic Purpura (ITP)
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 at:
Statistics provided on the frequency of ITP, the mortality/morbidity associated with the disease, and sex and age of patients.
ITP patient and family education and support resource.
Patient support Web site with information about ITP and other platelet disorders.
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General
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 Web site.
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