Locate healthcare providers and researchers who have knowledge of your condition.
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Tools for Researchers
A collection of resources and tools to aid you in your basic or clinical research efforts.
A searchable database of biospecimens collected, stored, and distributed by biorepositories in the United States and around the globe.
Answers questions about these research resources.
Provides researchers with organs, tissues, blood, and DNA or cell lines donated from people with rare diseases; works with patient advocacy groups; and provides a link between patient advocacy groups, patients with rare diseases, and researchers of those disorders.
European database dedicated to information on rare diseases and orphan drugs; it aims to improve management and treatment of genetic, auto-immune or infectious rare diseases, rare cancers, or not yet classified rare diseases.
The Healthcare Cost and Utilization Project (HCUP, pronounced "H-Cup") is a family of health care databases and related software tools and products developed through a Federal-State-Industry partnership and sponsored by the Agency for Healthcare Research and Quality (AHRQ). HCUP databases bring together the data collection efforts of State data organizations, hospital associations, private data organizations, and the Federal government to create a national information resource of patient-level health care data (HCUP Partners). HCUP includes the largest collection of longitudinal hospital care data in the United States, with all-payer, encounter-level information beginning in 1988. These databases enable research on a broad range of health policy issues, including cost and quality of health services, medical practice patterns, access to health care programs, and outcomes of treatments at the national, State, and local market levels.Back to top
The FDA Office of Orphan Products Development (OOPD) mission is to advance the evaluation and development of products (drugs, biologics, devices, or medical foods) that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions. In fulfilling that task, OOPD evaluates scientific and clinical data submissions from sponsors to identify and designate products as promising for rare disease and to further advance scientific development of such promising medical products. The office also works on rare disease issues with the medical and research communities, professional organizations, academia, governmental agencies, industry, and rare disease patient groups.
Information about Food and Drug Administration (FDA) regulation of medical devices and radiologic health and devices that benefit patients with a rare disease that affects fewer than 4,000 individuals in the United States per year.Back to top
Information about the impact of human genetic research on disease prevention and public health.
Provides updated information on how human genomic discoveries can be used to improve health and prevent disease and provides links to CDC- wide activities in public health genomics.Back to top
A directory of research tools and resources for cancer research.
Includes databases, statistics, ophthalmic collections, and opportunities in research.
Databases, biologic resources, clinical and population studies, new study design resources, and training opportunities.
Research resources developed at and outside of the NHGRI relating to all aspects of the human and animal genome programs.
Information on the divisions, interdivision programs, microbiology, infectious diseases, and NIAID Pathogen Genomics Resources for Researchers.
Genetic databases, bioinformatic tools, flow cytometric resources, microarray Web resources, and research guidelines.
Information about Biomedical Technology Resource (P41) Centers and how biomedical investigators who have NIH-supported projects can gain access to the newest and most advanced technologies, techniques, and methodologies.
Information about the Dental, Oral, and Craniofacial Data Resource Center for oral health surveys and the Head and Neck Tissue Array (HNTA) International Initiative.
Information on how resources can be made available to researchers including reagents, biological samples, specialized animal phenotyping cores, and bioinformatics.
Information about the NIEHS Division of Intramural Research Core Facilities and services.
Answers questions about these research resources.
Information about animal models, research reagents, clinical and translational resources, gene expression, cell/tissue, and DNA.
Database resources, graphics gallery, research guidelines, resources, and related Web sites.
Information about NEIBank ear libraries, model organisms, stem cells, and the trans-NIH Mouse Initiative.
Links to bioengineering, human tissue repositories, disease models, neuroscience research resources, and other resources for research.
A searchable database of technologies available for licensing from NIH and U.S. universities.
Technologies related to rare diseases or conditions available for commercial licensing are listed under the related disease or condition.Back to top