This is a non-exhaustive list of organisations and online portals providing a broad range of information about various illnesses including definitions, causes, treatments, and publications about illnesses for patients, their families and professionals in the field.
Orphanet
http://www.orpha.net/
Orphanet is a multi-lingual reference portal on rare diseases and orphan drugs, providing information on 6,000 diseases. It offers a wide range of services, including an encyclopedia of rare diseases, a database of services and an inventory of orphan drugs.
PubMed
http://www.ncbi.nlm.nih.gov/
PubMed provides access to more than 21 million MEDLINE citations, life science journals, and links to many sites providing full text articles free of charge.
National Organization for Rare Disorders (NORD)
http://rarediseases.org/
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than than 230 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Disease InfoSearch
http://diseaseinfosearch.org/
Disease InfoSearch provides information about diseases and their related support and advocacy networks. It began as a feature of Genetic Alliance's website, and this expansion improves both navigation and the number of information sources included. The site's goal is to serve as a credible resource for people to learn more about the signs and symptoms of conditions, the latest research, and how to access support.
Genetics Home References
http://diseaseinfosearch.org/
http://ghr.nlm.nih.gov/ Genetics Home Reference is the National Library of Medicine's website for consumer information about genetic conditions and the genes or chromosomes related to those conditions.
Global Genes - Allies in Rare Diseases
https://globalgenes.org/
Global Genes™ is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. What began as a grassroots movement in 2009, with just a few rare disease parent advocates and foundations, has since grown to over 500 global organizations. Their mission is to eliminate the challenges of rare disease by building awareness, to build awareness, educate the global community, and provide critical connections and resources that equip advocates to become activists for their disease.
Patients Like Me
https://www.patientslikeme.com/
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
CrowdMed
https://www.crowdmed.com/
CrowdMed is a revolutionary approach to healthcare, harnessing the wisdom of crowds to solve even the world's most difficult medical cases. By empowering both medical experts and patients through an easy-to-use online service, CrowdMed helps diagnose medical issues faster and more accurately - not only improving outcomes, but saving lives.
Rare Genomics Institute
http://raregenomics.org/
Rare Genomics Institute (RGI) is an international non-profit that provides access to cutting edge research technologies, physicians, and scientists across the globe. By providing an expert network and an online crowdfunding mechanism, RGI helps families pursue personalized research projects for diseases not otherwise studied. They bring together scientists who share our passion for helping rare disease patients and leverage the crowdfunding capabilities of the Internet to bring the hope of a cure to our patients. RGI has published e-books on rare diseases which are available for download from their website.
Caregiver Action Network (CAN)
http://www.caregiveraction.org/
Caring for Rare Disease Caregivers: http://www.rarecaregivers.org
The Caregiver Action Network is America's leading family caregiver organisation working to improve the quality of life for more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailities of old age. CAN aimes to create resourceful caregivers, reduce caregiver stress, create respect for family caregivers and create capable caregivers.