A guide for patients and their families to find and link up with support groups, agencies, organizations, and other tools and resources.
Immuno-Hematology Foundation Websites: A-T Childrens Projecthttp://www.atcp.org/
The A-T Children's Project is a nonprofit organization that raises funds to support and coordinate biomedical research projects, scientific conferences and a clinical center aimed at finding life-improving therapies and a cure for ataxia-telangiectasia (A-T).
Clinical Immunology Societyhttp://www.clinimmsoc.org/
The mission of the Clinical Immunology Society is to facilitate education, translational research and novel approaches to therapy in clinical immunology to promote excellence in the care of patients with immunologic/inflammatory disorders.
Genetics Home Referencehttp://ghr.nlm.nih.gov/
Genetics Home Reference provides consumer-friendly information about the effects of genetic variations on human health.
Immune Deficiency Foundation:http://primaryimmune.org/
The IDF is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.
Jeffrey Modell Foundation:http://www.info4pi.org/
Vicki and Fred Modell established the Jeffrey Modell Foundation (JMF) in 1987, in memory of their son Jeffrey, who died at the age of fifteen, from complications of Primary Immunodeficiency (PI) - a genetic condition that is chronic, serious, and often fatal. JMF is a global nonprofit organization dedicated to early diagnosis, meaningful treatments and, ultimately, cures through research, physician education, public awareness, advocacy, patient support and newborn screening.
The interNational Early Onset Paediatric IBD Cohort Study (NEOPICS) brings together international Pediatric Gastroenterologists and Scientists from academic centers across the globe to work together to identify and investigate the causes, and develop new treatments for young children and infants with IBD.
Primary Immune Deficiency Treatment Consortium:http://rarediseasesnetwork.epi.usf.edu/PIDTC/
The PIDTC is a group of major centers nationwide, including the University of Michigan, whose goal is to improve the lives of patients with rare immunologic disorders and support families and physicians of these patients.
Severe Chronic Neutropenia International Registry:https://depts.washington.edu/registry/
The SCNIR's mission is to establish a global database of treatment and disease-related outcomes for persons diagnosed with SCN. Collection of this information will lead to improved medical care and is used for research to determine the causes of neutropenia.
XLP Research Trust:http://www.xlpresearchtrust.org/
The X-Linked Lymphoproliferative Disease Research Trust provides contact for patients and families affected by XLP and funds XLP related research.
Patient Groups and Camps:
Dyskeratosis Congenita Outreach:http://www.dcoutreach.com/
This community is a collection of patients, family members and friends affected by Dyskeratosis Congenita. Here patients and their families can find support from each other and from physicians dedicated to caring for patients with DC.
International Patient Organisation for Primary Immunodeficiencyhttp://www.ipopi.org/
IPOPI is the association of national patient organisation dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency (PID) patients worldwide.
National Neutropenia Network:http://www.neutropenianet.org/
The NNN has two main goals: First, to coordinate efforts on a national scale to promote awareness and education of Neutropenia. Second, to strive to develop a support system for individuals and families affected by Neutropenia.
- UPCOMING EVENT: Family Conference July 11-13th, Ann Arbor, MI
- For more information and to register, visit: http://www.neutropenianet.org/conference/conference-registration/
Patient Advocacy and Support Groups
Angel Flight at NIH provides air transportation for patients who are in financial need and cannot afford the cost of air travel.
Caregiver Action Networkhttp://caregiveraction.org/about/
The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
Insure Kids Nowhttp://www.insurekidsnow.gov/
This website provides links to state child health programs
National Organization of Rare Disease:https://www.rarediseases.org/
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
National Patient Travel Centerhttp://www.patienttravel.org/
The National Patient Travel Center provides information about all forms of charitable, long-distance medical transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network. The purpose of the National Patient Travel Center is to ensure that no ﬁnancially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical transportation.
NeedyMeds is a 501(c)(3) national non-profit information resource dedicated to helping people locate assistance programs to help them afford their medications and other healthcare costs.