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April 22, 2026Health ExpectationsOpen Access

‘If You Don't Fight for Yourself, No One Else Will’: An In‐Depth Interpretative Phenomenological Analysis of Rare Disorder Care Advocacy in Aotearoa New Zealand

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Authors

LBLucy BennettTOTara N. Officer

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Overview

In-depth analysis explores care advocacy for rare disorders, suggesting community involvement enhances support.

Key Points

  • This research aims to explore the experiences of care advocacy among individuals with rare disorders in Aotearoa New Zealand.
  • Conducted interpretative phenomenological analysis involving participants connected with Rare Disorders New Zealand.
  • Participants reviewed and amended their data to ensure accuracy and relevance.
  • Engaged a Māori advisor to assist in the analysis of data from Māori participants.
  • Identified key themes in advocacy experiences, highlighting the importance of self-advocacy.
  • Found that community and social media play significant roles in supporting individuals with rare disorders.

Cite This Study

Bennett et al. (2026) studied this question.

synapsesocial.com/papers/69e865126e0dea528dde9a16https://doi.org/10.1111/hex.70668
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