The Undiagnosed Diseases Network takes on the toughest cases, patients whose symptoms have defied explanation.
Diagnosing rare illnesses could get easier, thanks to new web-based tools that pool information from a wide variety of sources.
GMO Sapiens: the Life-Changing Science of Designer Babies provides a comprehensive overview of the state of the art science, and what headline-grabbing breakthroughs we can expect in the very near future...
By identifying the gene behind a mysterious debilitating condition, researchers can define a rare disease and transform a patient’s life.
I’m happy we all have more internet resources, such as disease specific support groups. Researchers are increasingly turning to these advocacy groups in their search for clinical trial participants. Perhaps most importantly, patients with rare diseases can find tips, companionship, and support from others.
As comprehensive genetic tests become more widespread, patients and experts mull how to deal with unexpected findings.
A powerful new search engine designed to help diagnose rare diseases could prove a boon for both medics and the public.
Sometimes it isn’t so great being one in a million.
BioNews Services is a leading online health, science and research publication company that exists for one purpose: to serve the patient living with a rare disease. We do this by connecting them with current, trusted, relevant news and information. Delivered daily.
The search engine for difficult medical cases.
Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.
A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.
CrowdMed is revolutionizing healthcare by harnessing ‘the wisdom of crowds’ to help solve even the world’s most difficult medical cases quickly and accurately online. After 4 years of development and refinement, CrowdMed’s patented prediction market technology can suggest diagnoses to real-world medical cases that have stumped doctors for years.
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 561 rare disease patient organisations in 51 countries.
We are the voice of 30 million people affected by rare diseases throughout Europe.
The Forgotten Diseases Research Foundation is a 501c(3) non-profit organization. We opened our doors in early 2012. We have a free online tool that will help people get a diagnosis for rare and very rare disesases.
The Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
Lay advocacy and support groups, information on genetic conditions and birth defects for professionals, educators, and individuals, National and International organizations.
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®.
A growing pool of information gathered from experiences of others.
Founded in 1994 out of a shared need for better medical information and support, MedHelp is the pioneer in online health communities. The MedHelp site connects people with the leading medical experts and others who have similar experiences.
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.
The portal for rare diseases and orphan drugs.
The Rare Bone Disease Alliance, originally created in 2006 as a patient advocacy network and called the Rare Bone Disease Network, has grown into a strong coalition focused on educating medical professionals, expanding research, and assisting patients and communities affected by rare bone diseases.
News and commentaries including patient stories provided by Global Genes, a leading rare disease patient advocacy organization.
Whether you are with your family at home, 10 people in an office, 100 people at a conference or 1000 people at a public gathering: RAISE AND JOIN YOUR HANDS to show your solidarity with rare disease patients around the world!
RDUK is the national alliance for people with rare diseases and all who support them. It was established by Genetic Alliance UK, the national charity of over 160 patient organisations supporting all those affected by genetic conditions, in conjunction with other key stakeholders in November 2008.
Individuals with rare diseases form a minority of our society and receive little or no attention.
Rare Diseases Society (Singapore)is a non-profit organization initiated by parents of children with LSD (Lysosomal Storage Disorder}. Established in 2011, it aims to create awareness about various life threatening rare diseases (RD).
The National Registry of Rare Kidney Diseases (RaDaR) is an initiative by UK kidney specialists (the Renal Association). It is designed to pull together information from patients who have certain rare kidney diseases. This will give a much better understanding of how these illnesses affect people. It will also speed up research.
RareShare is a unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders.
Rudy is a study in Rare diseases of the bones, joints and blood vessels. Headed up by a research team at the University of Oxford, Rudy aims to transform clinical care for participants through patient driven research.
The mission of ButYouDontLookSick.com is to help everyone with a chronic illness or invisible disability, in order for them to live their lives to the fullest and not feel isolated and alone. We believe that our medical circumstances have put us in a unique and understanding position, so that we can help each other through similar difficult times.
The ICORD (International Conferences for Rare Diseases and Orphan Drugs) Society was formed on September 13, 2007 in Brussels. Its mission is to improve the welfare of patients with rare diseases and their families world-wide through better knowledge, research, care, information, education and awareness.
MRDS is a voluntary organisation set-up to represent and look out for the welfare of individuals including their families that are affected by rare disorders.
Making healthcare better for everyone through sharing, support, and research.
So what is your visible hope? We are collecting your images, photos, illustrations, of things that bring you hope! Sometimes hope can be hard to understand, because we cannot see it. But perhaps we can try to show others the images in our life that help us feel hopeful even when dealing with chronic illness or pain. nvisibleIllnessWeek.com
Your Free Online Medical Diagnosis & Symptoms Analysis Tool.
Providing breaking news, patient stories and FDA updates, specific to those within the rare disease community.