Developing and evaluating rare disease educational materials co-created by expert clinicians and patients: the paradigm of congenital hypogonadotropic hypogonadism-Reference-Cited by-同舟云学术

Developing and evaluating rare disease educational materials co-created by expert clinicians and patients: the paradigm of congenital hypogonadotropic hypogonadism

Published:2017-03-20 Issue:1 Volume:12 Page:
ISSN:1750-1172
Container-title:Orphanet Journal of Rare Diseases
language:en
Short-container-title:Orphanet J Rare Dis

Author:

Badiu Corin, ,Bonomi Marco,Borshchevsky Ivan,Cools Martine,Craen Margarita,Ghervan Cristina,Hauschild Michael,Hershkovitz Eli,Hrabovszky Erik,Juul Anders,Kim Soo-Hyun,Kumanov Phillip,Lecumberri Beatriz,Lemos Manuel C.,Neocleous Vassos,Niedziela Marek,Djurdjevic Sandra Pekic,Persani Luca,Phan-Hug Franziska,Pignatelli Duarte,Pitteloud Nelly,Popovic Vera,Quinton Richard,Skordis Nicos,Smith Neil,Stefanija Magdalena Avbelj,Xu Cheng,Young Jacques,Dwyer Andrew A.

Funder

Rare Disease Foundation and the BC Children’s Hospital Foundation

Publisher

Springer Science and Business Media LLC

Subject

Pharmacology (medical),Genetics (clinical),General Medicine

Link

http://link.springer.com/content/pdf/10.1186/s13023-017-0608-2.pdf

Reference36 articles.

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5. Vicari S, Cappai F. Health activism and the logic of connective action. A case study of rare disease patient organisations. Inf Commun Soc. 2016;19:1653–71.

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