{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,25]],"date-time":"2026-03-25T13:39:37Z","timestamp":1774445977572,"version":"3.50.1"},"reference-count":4,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2023,4,17]],"date-time":"2023-04-17T00:00:00Z","timestamp":1681689600000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Parkinson\u2019s Disease"],"published-print":{"date-parts":[[2023,4,17]]},"abstract":"<jats:p> Patient organizations play an ever-growing role in modern societies by providing organized resources for patients and care partners. Importantly, patient organizations enable patients to define and share their needs and views. In Parkinson\u2019s disease (PD), patient organizations play significant roles in different countries. However, there is limited support and resources tailored for people with early onset Parkinson\u2019s disease (EOPD). These individuals face unique social, professional, and personal challenges that are often not accounted for by general PD organizations, which play very important roles for a significant proportion of individuals with PD. In Portugal, this was the situation until 2022, when Young Parkies Portugal (YPP) was founded to allow people with EOPD and various stakeholders to join forces to cover their specific needs. In this manuscript, we aim to share our experience in building an association for people with EOPD, reflecting on the reasons for this need, the activities developed thus far, challenges in implementation, and future directions. In summary, we believe that nonprofit organizations like YPP play an essential role in shaping the care and support of people with PD care and should be considered key partners of care alongside the larger multidisciplinary team. We are confident that sharing our experience can inspire and guide the implementation of similar initiatives in other countries. <\/jats:p>","DOI":"10.3233\/jpd-230039","type":"journal-article","created":{"date-parts":[[2023,5,9]],"date-time":"2023-05-09T21:44:55Z","timestamp":1683668695000},"page":"633-636","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":5,"title":["People with Early Onset Parkinson\u2019s Disease: Empowered to Improve Care"],"prefix":"10.1177","volume":"13","author":[{"given":"Josefa","family":"Domingos","sequence":"first","affiliation":[{"name":"Department of Neurology, Donders Institute for Brain, Cognition and Behavior, Center for Medical Neuroscience, Center of Expertise for Parkinson and Movement Disorders, Radboud University Medical Center, Nijmegen, The Netherlands"},{"name":"Egas Moniz Physiotherapy Clinic and Research Centre, Centro de Investiga\u00e7\u00e3o Interdisciplinar Egas Moniz (CiiEM), Portugal"},{"name":"Young Parkies Portugal, Porto, Portugal"}]},{"given":"Maria do Carmo","family":"Teixeira Bastos","sequence":"additional","affiliation":[{"name":"Young Parkies Portugal, Porto, Portugal"}]},{"given":"Rui","family":"Couto","sequence":"additional","affiliation":[{"name":"Young Parkies Portugal, Porto, Portugal"}]},{"given":"Ana Rita","family":"Cameira","sequence":"additional","affiliation":[{"name":"Young Parkies Portugal, Porto, Portugal"}]},{"given":"Ana Leal","family":"Cardoso","sequence":"additional","affiliation":[{"name":"Young Parkies Portugal, Porto, Portugal"}]},{"given":"Alexandre","family":"Reff\u00f3ios","sequence":"additional","affiliation":[{"name":"Young Parkies Portugal, Porto, Portugal"}]},{"given":"Susana","family":"Magalh\u00e3es","sequence":"additional","affiliation":[{"name":"Young Parkies Portugal, Porto, Portugal"},{"name":"Institute of Research and Innovation in Health of the University of Porto (i3S-UP), Porto, Portugal"}]},{"given":"Jo\u00e3o","family":"Massano","sequence":"additional","affiliation":[{"name":"Young Parkies Portugal, Porto, Portugal"},{"name":"Department of Neurology, Centro Hospitalar Universit\u00e1rio de S\u00e3o Jo\u00e3o and Faculty of Medicine University of Porto, Porto, Portugal"}]},{"given":"Tiago Fleming","family":"Outeiro","sequence":"additional","affiliation":[{"name":"Young Parkies Portugal, Porto, Portugal"},{"name":"Department of Experimental Neurodegeneration, Center for Biostructural Imaging of Neurodegeneration, University Medical Center G\u00f6ttingen, G\u00f6ttingen, Germany"},{"name":"Max Planck Institute forMultidisciplinary Sciences, G\u00f6ttingen, Germany"},{"name":"Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University, FramlingtonPlace, Newcastle Upon Tyne, UK"},{"name":"Scientific Employee with an Honorary Contract at Deutsches Zentrum f\u00fcr Neurodegenerative Erkrankungen (DZNE), G\u00f6ttingen, Germany"}]}],"member":"179","published-online":{"date-parts":[[2023,5,8]]},"reference":[{"key":"ref001","doi-asserted-by":"publisher","DOI":"10.1101\/cshperspect.a008870"},{"key":"ref002","doi-asserted-by":"publisher","DOI":"10.3233\/JPD-181474"},{"key":"ref003","doi-asserted-by":"publisher","DOI":"10.1002\/mdc3.13523"},{"key":"ref004","doi-asserted-by":"publisher","DOI":"10.1038\/gt.2017.33"}],"container-title":["Journal of Parkinson\u2019s Disease"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.3233\/JPD-230039","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.3233\/JPD-230039","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.3233\/JPD-230039","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,3,11]],"date-time":"2025-03-11T09:37:12Z","timestamp":1741685832000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.3233\/JPD-230039"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,4,17]]},"references-count":4,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2023,4,17]]}},"alternative-id":["10.3233\/JPD-230039"],"URL":"https:\/\/doi.org\/10.3233\/jpd-230039","relation":{},"ISSN":["1877-7171","1877-718X"],"issn-type":[{"value":"1877-7171","type":"print"},{"value":"1877-718X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,4,17]]}}}