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http://hdl.handle.net/1942/36502| Title: | Crowd Funding for Orphan Drugs: The Case of Baby Pia | Authors: | PINXTEN, Wim | Issue Date: | 2021 | Publisher: | FRONTIERS MEDIA SA | Source: | Frontiers in pharmacology, 12 (Art N° 787342) | Abstract: | Medical 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. | Notes: | Pinxten, W (corresponding author), Hasselt Univ, Fac Med & Life Sci, Res Grp Healthcare & Eth, Hasselt, Belgium. wim.pinxten@uhasselt.be |
Keywords: | rare diseases;orphan drugs;ethics;crowd funding;SMA;zolgensma | Document URI: | http://hdl.handle.net/1942/36502 | e-ISSN: | 1663-9812 | DOI: | 10.3389/fphar.2021.787342 | ISI #: | 000738977400001 | Rights: | 2021 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. | Category: | A1 | Type: | Journal Contribution | Validations: | ecoom 2023 |
| Appears in Collections: | Research publications |
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|---|---|---|---|---|
| fphar-2021-787342 1..5.pdf | Published version | 533.08 kB | Adobe PDF | View/Open |
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