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28 Mar 2018 at 12:00AM

ENETS wrap up from CAG member Katie Golden

Here are Katie Golden's journal reflections from ENETs....

7th March

Great to see close to 700 Clinicians and Researchers who wish to learn more and are new to NET diagnosis and therapy here today at a Post Graduate Course.....brain overload but great to be a part of it!

8th March

Heard lots about the clinical trials around the world that are going on or coming up, so much happening. Think we all need to make sure we are kept informed of trials.

Information overload but so good to see 740 people from around the world wanting to learn about NETs. Also realising how lucky we are to have The Unicorn Foundation all around the country and in each state. Other countries have multiple (competitive) organisations which means patients are not all receiving the same information.

10th March

It was great to be given the chance to go to ENETs. There were lots of scientific talks but good to be immersed in it. Very appreciative of INCA and ENETs for making it possible for many who went.

Simone is now the President of INCA which is a great honour for her and the Unicorn Foundation. It was really reassuring to see both Simone and Kate busy with many people from all over the world, other patient support group leaders, nurses, doctors and basically just everyone associated with NETs.

My main learnings were that there are so many trials going on around the world, obviously some more relevant than others but worth asking the questions to doctors and investigating to make sure we are being considered. Plus lots of other specific learnings related to treatment and symptoms which I know Kate will pass on when we return.

Thank you Simone and Kate and I look forward to APNETs in Melb later this year!


Category: Advocacy