title: Building treasures for rare disorders.
abstract: The internet pre-eminently marks an era with unprecedented chances for patient care. Especially individuals with rare disorders and their families can benefit. Their handicap of low numbers vanishes and can become a strength, as small, motivated and well-organized international support groups allow easily fruitful collaborations with physicians and researchers. Jointly setting research agendas and building wikipedias has eventually led to building of multi-lingual databases of longitudinal data on physical and behavioural characteristics of individuals with several rare disorders which we call waihonapedias (waihona meaning treasure in Hawaiian). There are hurdles to take, like online security and reliability of diagnoses, but sharing experiences and true collaborations will allow better research and patient care for fewer costs to patients with rare disorders.
authors.affiliation: Department of Paediatrics, AMC, University of Amsterdam, The Netherlands.
authors.forename: Melanie
authors.initials: M
authors.lastname: Baas
authors.affiliation: Department of Paediatrics, AMC, University of Amsterdam, The Netherlands.
authors.forename: Sylvia
authors.initials: S
authors.lastname: Huisman
authors.affiliation: Pitt-Hopkins Parents Support Group, Leidschendam, The Netherlands.
authors.forename: John
authors.initials: J
authors.lastname: van Heukelingen
authors.affiliation: Cornelia de Lange Syndrome Support Group, IJmuiden, The Netherlands.
authors.forename: Gerritjan
authors.initials: G
authors.lastname: Koekkoek
authors.affiliation: Marshall-Smith Syndrome Foundation, The Hague, The Netherlands.
authors.forename: Henk-Willem
authors.initials: HW
authors.lastname: Laan
authors.affiliation: Department of Paediatrics and Translational Genetics, AMC, University of Amsterdam, The Netherlands. Electronic address: r.c.hennekam@amc.uva.nl.
authors.forename: Raoul C
authors.initials: RC
authors.lastname: Hennekam
mesh_terms: D035843:Biomedical Research; D003299:Cooperative Behavior; D006801:Humans; D033181:Information Dissemination; D020407:Internet; D035583:Rare Diseases / Q000175:diagnosis; D012657:Self-Help Groups
keywords: Innovation; Internet; Rare disorders; Wiki; eHealth