Resources
Finding reliable information can be challenging when you or someone you care about has a rare disease. PARDAC has compiled these trusted resources to help patients, families, healthcare professionals, researchers, lawmakers, and advocates find information, support, and opportunities to get involved.
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Clinicaltrials.gov
A searchable database of clinical research studies from the United States and other countries. Patients and families can look up studies by disease, location, eligibility, and study status, and can also find information about study results.
Global Genes
A patient advocacy group that offers tools, resources, and community programs for people with rare diseases, their families, and advocates.
MedlinePlus
The National Library of Medicine’s health website for the public. It provides easy-to-understand information about diseases, conditions, tests, medications, and wellness. The site includes a medical encyclopedia, drug details, and some Spanish-language content.
National Organization for Rare Disorders (NORD)
A leading advocacy group for people and families affected by rare diseases. It offers education, policy support, financial help, and research resources.
NIH Genetic and Rare Diseases Information Center (GARD)
A program from the National Institutes of Health. It offers clear, reliable, and current information about rare and genetic diseases.
NIH Rare Diseases Clinical Research Network
An initiative that supports research on rare diseases. It brings together researchers, patients, and advocacy groups to work together at different clinical sites.
Orphanet
An international reference portal for rare diseases and orphan drugs. It includes a disease encyclopedia, expert centers, and a diagnostic directory.
Pubmed
A free search tool from the National Library of Medicine. It covers millions of citations and summaries from biomedical and life science journals. It is a standard starting point for finding peer-reviewed research on a disease, treatment, or topic. Many entries link to the full articles.
Rare Action Network
NORD’s national advocacy network that empowers individuals, state-level advisory councils, and communities to advocate for policies and laws that benefit rare disease patients.
Rare Disease Day
The official website for the yearly awareness event held on the last day of February. The site provides materials, event listings, and ways to get involved.