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April 22, 2026Health Expectations1 citationsOpen 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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LBLucy BennettTOTara N. Officer

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.

Abstract

Rare Disorders New Zealand, the national representative body of people living with rare disorders and their families, supported this research, including its promotion through their social media channels. Participants could review and amend their data, and a Māori advisor was available to guide data analysis from Māori participants.

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Cite This Study

Bennett et al. (2026) studied this question.

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