(US site) Keyword-searchable database of over one thousand member-run American "self-help" support groups for any specific illness, disability, addiction, bereavement situation, parenting, caregiver concern, abuse, or other stressful life situation. Listing of local non-profit self-help group clearinghouses worldwide. Suggestions for starting both community and online groups, research studies, a registry for those trying to start new nationals or internationals that don't yet exist in the world, and more.
(US site) From University of Kansas Medical Center. Professionals, educators, and individuals seeking information on conditions or birth defects will find information through this list, or through national organizations, international organizations, categories of conditions, consulting a genetic counsellor / clinical geneticist, kids sites or other sites.
(US site) Is a gateway consumer health and human services information web site from the United States government. Healthfinder.gov can lead you to "support and self-help groups, as well as the government agencies and not-for-profit organizations that produce reliable information for the public".
(International site) The IAPO website is the place for patients' organizations around the world to interact with one another and with other stakeholders in healthcare, including health professionals, policy makers and representatives of the pharmaceutical, medical devices, biotechnology and insurance industries. The website has many special features, including a Global Directory of Patients' Organizations; The Patients' Exchange (resources and support for patients' organizations); The Patient's Network magazine online; and a Patient-Centred Healthcare Portal.
(Ireland) A comprehensive directory of Irish Healthcare.
(US site) Their Patient Network section is for putting patients in touch with other patients, for the purpose of sharing information & support.
(US site) NORD is a federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities.