The Office of Rare Diseases Research (ORDR) at the National Institutes of Health (NIH) coordinates research and information on rare diseases at the NIH. The ORDR website aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about ORDR- sponsored biomedical research, scientific conferences, and rare and genetic diseases. It also serves as a portal to information on major topics of interest to the rare diseases community.
Genetic and Rare Diseases Information Center (GARD) is a collaborative effort of two agencies of the National Institutes of Health, The Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI), committed to helping people find useful information about genetic conditions and rare diseases.
The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency — making important discoveries that improve health and save lives. NIH is made up of 27 Institutes and Centers, each with a specific research agenda that often focuses on particular diseases or body systems, and is the largest source of funding for medical research in the world. They have a comprehensive listing of publications and clinical trials, and offer resources by topic, disease, and age groups not limited to rare diseases.
EURORDIS, the voice of 30 million people affected by rare diseases throughout Europe, is a non-governmental patient-driven alliance of patient organizations representing 561 rare disease patient organizations in 51 countries. Rare disease patients are able to access new developments regarding their disease throughout the world.
Canadian Organization for Rare Disorders (CORD) Canada’s national network for organizations representing patients with rare disorders works with governments, researchers, clinicians, and industry to promote research, diagnosis, treatment, and services for all rare disorders in Canada.
RareConnect is a multilingual site that connects rare disease patients globally. Living with a rare disease can be an isolating experience. RareConnect was created by EURORDIS (European Rare Disease Organization) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources. Connect to join existing patient communities, or contact them to explore creation of a new disease-specific community for your rare disease group.
Genetic Alliance – Their programs and initiatives focus on a broad range of topics in genetics, health, and advocacy with a website that offers resources such as DiseaseInfoSearch, Newborn Screening, and Family Health History. Their initiatives improve health systems through partnerships with communities and individuals.