DIPG in children: What would you like to know?

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DIPG in children: What would you like to know?

by Chardy95 on Thu Feb 07, 2019 01:16 AM

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Hi all,

I am currently a final year student doctor on the paediatric palliative care team at a major metropolitan hospital in Australia. 

We are looking to develop a booklet that would help parents and children through the journey of DIPG, from diagnosis onwards. If such a booklet existed, what do you think would be the most helpful things to include? It can be anything from the incredibly detailed medical descriptions to complementary and alternative medicines, links to support groups or breavement specialists; basically anything that you think would be helpful for a young person and their family at the time of diagnosis.

Thanks, and we are all incredibly appreciative of your help with this project.

- Chris

RE: DIPG in children: What would you like to know?

by bdesserich on Fri Feb 08, 2019 01:18 PM

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We actually have developed this online at DIPG.org .  We chose note to print anything because data changes each and every day as they learn more about DIPG and the preinted product would be out of date in months. 

RE: DIPG in children: What would you like to know?

by Chardy95 on Sun Feb 10, 2019 10:15 PM

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On Feb 08, 2019 1:18 PM bdesserich wrote:

We actually have developed this online at DIPG.org " target="_blank" rel="nofollow">DIPG.org "" target="_blank" rel="nofollow">http://DIPG.org " target="_blank" rel="nofollow">DIPG.org " target="_blank" rel="nofollow">DIPG.org " target="_blank" rel="nofollow">DIPG.org .  We chose note to print anything because data changes each and every day as they learn more about DIPG and the preinted product would be out of date in months. 

Hi!

Thank you for replying to this post; I have already seen the awesome work at DIPG.org " target="_blank" rel="nofollow">DIPG.org and have directed a number of our patients there already. 

What we were thinking though was something a bit more personalised for the parents; for example, would a section on dieticians and what they do be helpful? Would an explanation of the dying process be helpful? Would discussing the role of a paediatric palliative care physician be helpful?

Also hopefully making it a bit more personalised to an Australian audience would be awesome, with stats in particular being ideal.

Thanks again for replying! 

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