Journal Article

DZNE-2023-00677

http://join2-wiki.gsi.de/foswiki/pub/Main/Artwork/join2_logo100x88.png People with Early Onset Parkinson's Disease: Empowered to Improve Care.

Domingos, J. ; Teixeira Bastos, M. d. C. ; Couto, R. ; Cameira, A. R. ; Cardoso, A. L. ; Reffóios, A. ; Magalhães, S. ; Massano, J. ; Outeiro, T. F. (Last author)DZNE*

2023
IOS Press Amsterdam

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Please use a persistent id in citations: doi:10.3233/JPD-230039

Abstract: 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's disease (PD), patient organizations play significant roles in different countries. However, there is limited support and resources tailored for people with early onset Parkinson's 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.

Keyword(s): Humans (MeSH) ; Parkinson Disease: therapy (MeSH) ; Age of Onset (MeSH) ; Parkinson’s disease ; Parkinson’s disease ; early-onset ; neurodegeneration ; parkinsonism ; patient association

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Contributing Institute(s):

1. Epigenetics and Systems Medicine in Neurodegenerative Diseases (AG Fischer)

Research Program(s):

1. 352 - Disease Mechanisms (POF4-352) (POF4-352)

Appears in the scientific report 2023

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Database coverage:
; ; ; ; Clarivate Analytics Master Journal List ; DOAJ Seal ; Ebsco Academic Search ; Essential Science Indicators ; IF >= 5 ; JCR ; SCOPUS ; Science Citation Index Expanded ; Web of Science Core Collection

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