title: Driving interest in consolidating resources for the creation of a global rare disease patient registry.
authors.forename: Yaffa R
authors.initials: YR
authors.lastname: Rubinstein
authors.forename: Stephen C
authors.initials: SC
authors.lastname: Groft
mesh_terms: D004493:Education; D014943:Global Health; D006801:Humans; D008507:Medically Underserved Area; D009316:National Institutes of Health (U.S.); D035583:Rare Diseases / Q000453:epidemiology*; D012042:Registries; D012657:Self-Help Groups / Q000706:statistics & numerical data*; D014481:United States