Our Stories

Mon July 1st 2024



Share your Story with Us

We would love you to send your Fabry Story to us to share. This will not only help connect the diaspora of the fifty or so people diagnosed with Fabry across Aotearoa New Zealand but may enhance the push for targeted Fabry medicines.

Here are some suggestions you may wish to consider when telling your story:

  • How did your diagnosis come about?
  • What was your reaction to diagnosis?
  • How has your daily life been affected - e.g. financially, work, relationships with friends and family, mental health affected?
    • Challenges or obstacles that you face due to your diagnosis or the family or person you care for.
    • 300 - 500 words maximum.
    • A clear hi-res head and shoulders photo (optional)

Your complete life story is not required nor is a literary essay! (We may apply a little judicious editing). If you wish to use a pseudonym, please choose an alternative first name. If you are a parent or carer of someone with Fabry we welcome your story too. Please state this in your story.

Please note: Your story may go into a media kit and will be displayed on this website.

Send any content or inquiries to: support@fabry.org.nz

Do you or someone you know have Fabry Disease?

We're always looking to connect with families who are affected by Fabry disease so that we can share experiences, information, and support where possible.

Get in touch today

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