Consumer Stories Information Sheet

About Lynch Syndrome Australia

Lynch Syndrome Australia (LSA) is an all-volunteer run organisation, founded and governed by Lynch syndrome survivors, their families, and health care professionals who specialise in Lynch Syndrome.

If diagnosed early, we believe Lynch syndrome can have favourable outcomes which enhance survival, longevity and quality of life as well as emotional well-being.

With the provisions of knowledge, caring and respect for those living with Lynch Syndrome, coupled with a common theme of a prevalent positive attitude, we can be change agents, enhancing hope and survivability, impacting the life of countless thousands of people throughout our world.

How can you help?

Health professionals and the general community often have limited or little knowledge or understanding about Lynch syndrome. LSA is committed to raising awareness with health professionals and the wider community with an aim to improve the journey of individuals and families living with Lynch syndrome.

Personal stories are powerful.

We are inviting you to share your story with us about living with Lynch syndrome. Your story may be about your diagnosis, your journey through genetic testing or your experience with a cancer diagnosis.

Stories may be submitted as written narratives or as a short video.

What will LSA do with your story?

Patient stories will be hosted on the LSA website at https://lynchsyndrome.org.au/. This webpage will be open for anyone to view it, but remember the main purpose of the webpage is to share your experiences with others who maybe going through the same journey as well as helping health professionals to understand the difficulties individuals and families living with Lynch syndrome may have

We are privileged that you are willing to share your story with us and will treat it with the utmost respect:

  • LSA will never identify you as the source of the story, unless you elect and give permission for us to use your own name
  • All stories will be de-identified except for where you have given permission to use your own name. This means that you, your family, carers and any health professionals mentioned in your story will be given alias names, so they cannot be traced back to you or your location.
  • You will review your story (if editing is required) before your story is posted to the webpage.
  • You can withdraw from posting your story at any time. This includes once your story has been posted to the webpage. The story will be removed from the webpage immediately.
  • LSA will ONLY use your story for the purposes of the LSA website. If we feel your story will be of benefit to other LSA endeavours we will contact you and seek your consent to use your story for a different purpose. You may decline to have your story used for another purpose.

Important information

LSA will NOT accept or publish stories which defame health professionals and/or any health care settings, including medical practices, day surgery centres or hospitals.

LSA will NOT accept or publish stories which make reference to any experimental treatments or medications, including alternative treatments which are not part of main stream treatments.

Remember

Sharing your story maybe a difficult experience for you. Before you participate you may wish to talk to someone – a family member, a friend, a health consumer organisation or a phone counselling service such as Lifeline (Ph.: 131114)

Don’t forget you are free to withdraw from sharing your story at any time.

Privacy

LSA is committed to complying with the Privacy Act 1988 and the Australian Privacy Principles 2014 and the privacy provisions of all applicable legislation.

This privacy policy covers all personal information we hold.

For more information on Privacy visit www.lynchsyndrome.org.au