Author Topic: ATTR online infoday 13 May 2020  (Read 1684 times)

Miriam Vered

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ATTR online infoday 13 May 2020
« on: May 04, 2020, 08:35:56 am »
Dear all,


As you know we had planned a patient information day for ATTR Amyloidosis patients, relatives, carers and professionals on Wednesday the 13th of May. Due to the coronavirus crisis it cannot take place then and it has been postponed to Monday 7th of September 2020. Please put that date in your diary and we will keep you informed about our plans.


However, we have organised an online information session for Wednesday 13th of May 2pm till 4 pm, with talks by Prof M. Reilly on neuropathy and Prof J. Gillmore on cardiopathy. There will be an oportunity to catch up and ask questions.


This meeting will take place on Zoom and you can join on your computer, tablet, phone, or any device. You can register by clicking the link:


https://us02web.zoom.us/webinar/register/WN_YIwgnz99Qe2vfXLRl_UJZQ


It would be good if we could have every person attending registered. For example if you are going to attend with you wife or husband, please register both of you, even if you are going to watch it on the same device.


I am attaching the flyer for this webinar. Please forward it to others you think may be interested, feel free to share the flyer on your social media.


Any questions please get in touch, in the meantime, stay safe!


Best wishes.


Carlos


Mr Carlos Heras-Palou
Chairman
UK ATTR Amyloidosis Patients Association
ttramyloidosis.uk
« Last Edit: May 07, 2020, 12:40:48 pm by Miriam Vered »

Miriam Vered

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Re: ATTR online infoday 13 May 2020
« Reply #1 on: May 25, 2020, 06:38:38 am »
At the webinar organised by the UK ATTR Amyloidosis patient association  on the 13th of May 2020, we recorded the talks by our two experts and these are now available on youtube as two videos. The question and answer session and the discussion part of the mwebinar  is not on the recordings, just the talks.
If you click the link, it will open the video on Youtube:

Neuropathy in TTR Amyloidosis by Prof Mary Reilly: https://www.youtube.com/watch?v=Qjt_6xxJQzc

Cardiomyopathy in TTR Amyloidosis by Prof Julian Gillmore:
https://youtu.be/L5lbAlocdWM


They are at the new TTR Amyloidosis Youtube Channel. If you press "subscribe" and then the bell icon, it will send you a notification when we upload new videos.

 
Once again, many thanks to Prof Mary Reilly and Prof Julian Gillmore for their great talks, and to Prof Philip Hawkins for chairing the session.
 
Best wishes.
 
Carlos.
 
Mr Carlos Heras-Palou
Chairman
UK TTR Amyloidosis Patient Association
ttramyloidosis.uk
« Last Edit: January 06, 2021, 01:36:02 pm by Miriam Vered »

Tony Croft

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Re: ATTR online infoday 13 May 2020
« Reply #2 on: January 03, 2021, 09:55:29 am »
Hi

I tried to view Julian Gillmore ATTR talk on Utube but it just gives me an error message of Private... How can I view it, please?

Tony

Miriam Vered

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Re: ATTR online infoday 13 May 2020
« Reply #3 on: January 03, 2021, 10:11:28 am »
Hi Tony,
I'll see about getting that fixed.
Thanks for noticing.
I'll let you know when it's available

Tony Croft

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  • Diagnosed: 31st October 2019 ~ Glenfield Hospital Leicestershire
Re: ATTR online infoday 13 May 2020
« Reply #4 on: January 03, 2021, 10:43:18 am »
Thanks Miriam

I'm visiting NAC tomorrow...

Miriam Vered

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Re: ATTR online infoday 13 May 2020
« Reply #5 on: January 06, 2021, 01:37:38 pm »
I've changed the link in Carlos' message above, so it should work now. Thanks for drawing my attention to this.