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Submit your personal Story

Submit your personal story of living with a rare disease in Hong Kong. Sharing your personal story has benefits not only to the person telling the story but also for those who share a similar experience and the audience reading the story.

If you are willing to share your personal story of living with rare disease, please consider the following guidelines;

  • It is important to remember long stories with lots of detail are hard to read. Some things to include in your story may be areas such as;
  • The time taken to receive a diagnosis of the rare disease.
  • The 3 most important areas of need that affect your day to day life living with a rare disease.
  • The services, care, support you need to assist you / your family further.
  • Please refrain from naming Doctors by name or particular hospitals.

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By submitting this file you certify that this is an original work and you give Hong Kong Alliance for Rare Diseases consent to use the work contained in the file, with or without attribution. This use includes, but is not limited to, posting the work on the HKARD website; sharing it through HKARD and with various media-related publications. Should you wish for your Personal Story and/or associated Image to be removed at any time, please register your request through the email address:

Please Note: In accordance with HKARD's Privacy Policy and Confidentiality Policy, your published personal story will only include your first name, rare disease and the State/Territory of residence. HKARD will not include your email address or personal contact details.