Please use this identifier to cite or link to this item: http://hdl.handle.net/1942/36502
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dc.contributor.authorPINXTEN, Wim-
dc.date.accessioned2022-01-17T11:25:08Z-
dc.date.available2022-01-17T11:25:08Z-
dc.date.issued2021-
dc.date.submitted2022-01-17T06:26:57Z-
dc.identifier.citationFrontiers in pharmacology, 12 (Art N° 787342)-
dc.identifier.urihttp://hdl.handle.net/1942/36502-
dc.description.abstractMedical crowdfunding is a relatively new strategy to obtain access to orphan drugs. The case of Baby Pia, a Belgian girl with SMA type 1 for whom in 2018 more than $ 2.1 million was raised to get her treated with Zolgensma(R), illustrates well the potential power of medical crowdfunding. But apart from the success in raising money, the case is also of particular importance for the ethical issues it brings to the surface as related to justice, equity, power imbalances, responsibility, accountability, indebtedness and privacy.-
dc.description.sponsorshipEllen De Meyer, the mother of Pia, has kindly agreed to be interviewed. She took the time to share many experiences and insights, which was of invaluable contribution to this case report. She provided informed consent for the publication of this case study and for mentioning her full name and the name of Pia in this case report.-
dc.language.isoen-
dc.publisherFRONTIERS MEDIA SA-
dc.rights2021 Pinxten. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.-
dc.subject.otherrare diseases-
dc.subject.otherorphan drugs-
dc.subject.otherethics-
dc.subject.othercrowd funding-
dc.subject.otherSMA-
dc.subject.otherzolgensma-
dc.titleCrowd Funding for Orphan Drugs: The Case of Baby Pia-
dc.typeJournal Contribution-
dc.identifier.volume12-
local.format.pages5-
local.bibliographicCitation.jcatA1-
dc.description.notesPinxten, W (corresponding author), Hasselt Univ, Fac Med & Life Sci, Res Grp Healthcare & Eth, Hasselt, Belgium.-
dc.description.noteswim.pinxten@uhasselt.be-
local.publisher.placeAVENUE DU TRIBUNAL FEDERAL 34, LAUSANNE, CH-1015, SWITZERLAND-
local.type.refereedRefereed-
local.type.specifiedArticle-
local.bibliographicCitation.artnr787342-
dc.identifier.doi10.3389/fphar.2021.787342-
dc.identifier.pmid34970148-
dc.identifier.isi000738977400001-
local.provider.typewosris-
local.description.affiliation[Pinxten, Wim] Hasselt Univ, Fac Med & Life Sci, Res Grp Healthcare & Eth, Hasselt, Belgium.-
local.uhasselt.internationalno-
item.fullcitationPINXTEN, Wim (2021) Crowd Funding for Orphan Drugs: The Case of Baby Pia. In: Frontiers in pharmacology, 12 (Art N° 787342).-
item.fulltextWith Fulltext-
item.validationecoom 2023-
item.contributorPINXTEN, Wim-
item.accessRightsOpen Access-
crisitem.journal.eissn1663-9812-
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