{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,20]],"date-time":"2026-08-20T16:24:05Z","timestamp":1787243045958,"version":"build-2736575974"},"reference-count":49,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,8,20]],"date-time":"2026-08-20T00:00:00Z","timestamp":1787184000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,8,20]],"date-time":"2026-08-20T00:00:00Z","timestamp":1787184000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100000030","name":"Institute of Genetics","doi-asserted-by":"publisher","award":["165985"],"award-info":[{"award-number":["165985"]}],"id":[{"id":"10.13039\/501100000030","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000030","name":"Institute of Genetics","doi-asserted-by":"publisher","award":["185961"],"award-info":[{"award-number":["185961"]}],"id":[{"id":"10.13039\/501100000030","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["febs.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["FEBS Open Bio"],"abstract":"<jats:p>Patient advocates offer lived experience that can shape research priorities, methods, and outcomes. Patient engagement contributes valuable resources to research, including meaningful additions to research design, definition of research priorities, and dissemination of outcomes. It is therefore critical that patients and patient advocates be part of the biomedical research process; which can be achieved by changing the perspective of patients as the recipients of research outcomes, to being partners in the process. Patient, clinician, and researcher interactions are particularly important in rare disease research, where little funding is allocated to each disease, making the definition of research priorities even more important. Here, we outline how patients can contribute to biomedical research and provide a step\u2010by\u2010step guide for patient engagement at scientific conferences.<\/jats:p>","DOI":"10.1002\/2211-5463.70318","type":"journal-article","created":{"date-parts":[[2026,8,20]],"date-time":"2026-08-20T15:32:55Z","timestamp":1787239975000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["From patient advocacy to patient\u2010driven research: Building active partnerships beginning at the bench to reach the bedside"],"prefix":"10.1002","author":[{"given":"Jenica H.","family":"Kakadia","sequence":"first","affiliation":[{"name":"Department of Biochemistry The University of Western Ontario  London Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-7726-4795","authenticated-orcid":false,"given":"Rachel","family":"Heilmann","sequence":"additional","affiliation":[{"name":"The Rory Belle Foundation  Denver CO USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maximiliano","family":"Barrientos","sequence":"additional","affiliation":[{"name":"Charcot\u2010Marie\u2010Tooth Research Foundation  Atlanta GA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura","family":"MacNeill","sequence":"additional","affiliation":[{"name":"Charcot\u2010Marie\u2010Tooth Research Foundation  Atlanta GA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3406-338X","authenticated-orcid":false,"given":"Ingrid","family":"Vallee","sequence":"additional","affiliation":[{"name":"The Rory Belle Foundation  Denver CO USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah K.","family":"Schultz","sequence":"additional","affiliation":[{"name":"Department of Biochemistry The University of Western Ontario  London Canada"},{"name":"Children's Health Research Institute  London Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9500-8640","authenticated-orcid":false,"given":"Patrick","family":"O'Donoghue","sequence":"additional","affiliation":[{"name":"Department of Biochemistry The University of Western Ontario  London Canada"},{"name":"Department of Chemistry The University of Western Ontario  London Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8827-6196","authenticated-orcid":false,"given":"Angelica A.","family":"Moresco","sequence":"additional","affiliation":[{"name":"Children's Health Research Institute  London Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Victoria M.","family":"Siu","sequence":"additional","affiliation":[{"name":"Department of Biochemistry The University of Western Ontario  London Canada"},{"name":"Children's Health Research Institute  London Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1721-1667","authenticated-orcid":false,"given":"Ilka U.","family":"Heinemann","sequence":"additional","affiliation":[{"name":"Department of Biochemistry The University of Western Ontario  London Canada"},{"name":"Children's Health Research Institute  London Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,8,20]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/cts.13055"},{"key":"e_1_2_13_3_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41746-020-0277-8"},{"key":"e_1_2_13_4_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13063-017-1870-2"},{"key":"e_1_2_13_5_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-023-02837-9"},{"key":"e_1_2_13_6_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-022-02299-5"},{"key":"e_1_2_13_7_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-018-0810-x"},{"key":"e_1_2_13_8_1","doi-asserted-by":"publisher","DOI":"10.3389\/fmed.2024.1416123"},{"key":"e_1_2_13_9_1","unstructured":"Administration. 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