title: Patients with rare diseases work to jump-start research; advocacy groups create their own tissue banks to aid in drug treatment.
authors.forename: Amy Dockser
authors.initials: AD
authors.lastname: Marcus
mesh_terms: D018070:Biological Specimen Banks / Q000941:ethics / Q000458:organization & administration*; D035843:Biomedical Research; D030541:Databases, Genetic; D006801:Humans; D009965:Orphan Drug Production; D010344:Patient Advocacy; D035583:Rare Diseases / Q000235:genetics / Q000628:therapy; D012657:Self-Help Groups; D014481:United States