Uncover patient resources
PATIENT EDUCATION IS VITAL TO TREATMENT SUCCESS IN YOUR CIDP, PIDD, AND ITP PATIENTS
Downloadable materials for your unique patient.
For your CIDP patients
For your PIDD patients
Useful websites for your patients
Please note: The GAMUNEX-C.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 immunodeficiency diseases.
In order to ensure that your patients get all the answers they might need at any point throughout their treatment, consider referring them to the following online resources.
GBS-CIDP Foundation International
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, GBS-CIDP Foundation International 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 can 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.
National Institute of Neurological Disorders and Stroke
The mission of NINDS is to reduce the burden of neurologic 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.
Foundation for Peripheral Neuropathy
The mission of the Foundation for Peripheral Neuropathy is to help and heal people with peripheral neuropathy by providing neuropathy awareness, education, support, advocacy, and research.
Immune Deficiency Foundation (IDF)
A national voluntary health organization, the IDF is a nonprofit organization dedicated to improving the diagnosis and treatment of PIDD through research and education. The goal of IDF is to help patients with PIDD and their families to live a healthy and productive life. It also strives for a broader understanding of PIDD 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 website. IDF also sponsors local events such as patient meetings.
Check out the Patient and Family Handbook, a comprehensive resource for PIDD patients and their families.
Jeffrey Modell Foundation
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.
International Patient Organization for Primary Immunodeficiencies (IPOPI)
IPOPI is an international organization whose members are national patient organizations for PIDD. It unites the experiences, expertise, resources, and influence of its members to support the commitment to worldwide improvement in the care and treatment of patients with PIDD.
Worth taking a look at: Check out the FORUM section of the website. The postings are recent and come straight from patients and families. It's a good place to find support and make connections.
National Institute of Allergy and Infectious Diseases (NIAID)
The primary immune deficiency diseases page contains fact sheets, brochures, and news releases related to PIDD. It also has information regarding other immune defects, and related blood disorders.
Severe Combined Immune Deficiency (SCID) website
Barb Ballard, parent of a child diagnosed with SCID, started this website 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.
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 at: Statistics provided on the frequency of ITP, the mortality/morbidity associated with the disease, and the sex and age of patients.
ITP Support Association
ITP patient and family education and support resource.
Platelet Disorder Support Association
Patient support website with information about ITP and other platelet disorders.