Where to Start for Reliable Sources

scholar.google.com: quick way to search for peer reviewed articles

Hospital and academic medical centers: it’s institution-vetted and written for families and many have condition-specific pages that explain treatment approaches, what to expect, and questions to ask

PubMed (pubmed.ncbi.nlm.nih.gov): primary literature for research ranging from labwork to clinical studies.

National Organization for Rare Disorders (rarediseases.org): disease summaries, specialist directories, patient community connections

Global Genes (globalgenes.org): rare disease advocacy resources and community

Medscape (medscape.com): good for understanding what doctors are reading

Radiopaedia (radiopaedia.org): useful specifically for understanding imaging findings and radiology reports

Disease specific foundations and research groups

NCI (cancer.gov): comprehensive cancer information, treatment summaries, clinical trial listings, written for patients and families

NIH MedlinePlus (medlineplus.gov): plain language explanations of conditions, treatments, genetics, medications

FDA patient resources (fda.gov/patients): plain language explanations of drug approval process, clinical trials, how to read labels

NIH Reporter (reporter.nih.gov): what research is being funded

ClinicalTrials.gov: every registered trial, eligibility criteria, sponsoring institution, status

NCI PDQ (cancer.gov/publications/pdq): evidence-based summaries of treatment options, updated regularly, has both patient and clinician versions

Children’s Oncology Group (childrensoncologygroup.org): treatment guidelines specific to pediatric cancers, written for families and clinicians

Special thanks to Nikki Lyons for compiling this list