Author Topic: Lecture on amyloidosis at International Society of Nephrology meeting  (Read 11262 times)

Miriam Vered

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Today at around 4:45 pm, UK time, Professor Sir Mark Pepys will be giving a plenary lecture on amyloidosis at the International World Congress of Nephrology 2017 meeting in Mexico City, attended by about 10,000 nephrologists from around the world.
There is due to be live twitter feed coverage from the lecture - hashtag #WCN2017
The lecture will be filmed and I hope it will later be available for viewing on the ISN website.
Conference website - https://www.wcn2017.org/program


11 September 2017 update - if you are reading this topic for the first time, the lecture is now available for viewing on the NAC Patient Information website - click here.
« Last Edit: September 11, 2017, 10:18:57 am by Miriam Vered »

patpinchin

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #1 on: April 23, 2017, 11:52:44 am »
Thank-you Miriam so much for this. I hope I shall be able to tune in.
No one in the world better to listen to than Sir Mark where amyloidosis is concerned.  :) :) :)
Way to go Sir Mark and the amazing NAC.  :) :) :)
Pat

patpinchin

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #2 on: April 25, 2017, 12:03:18 pm »
Has anyone watched and listened to the recording of Professor Sir Mark Pepys plenary lecture at the International World Congress of Nephrology meeting in Mexico City? I was unable to watch it live.

Miriam the link you provided took me to the conference app which I downloaded. Under speakers I easily found Sir Mark but could not watch nor listen to his lecture. Do you please have a link to the ISN website. Maybe I could find the recording there? 0r have you any other suggestions please?
Pat

Miriam Vered

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #3 on: April 25, 2017, 02:36:45 pm »
I don't think the lecture is on the website yet.

patpinchin

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #4 on: April 26, 2017, 12:54:50 pm »
Thank-you Miriam.

Please you could let us know when it is?
Pat

Miriam Vered

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #5 on: April 26, 2017, 01:25:20 pm »
Yes, I'll post it here-.

patpinchin

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #6 on: April 28, 2017, 08:56:40 am »
Miriam, am I  losing it.......?
I thought you sent a notification to say the lecture was now available at the attached link??????

When I looked again I couldn' find the notification so am wondering if I dreamt it?
There is no link from you posted here, so I think I must be losing it!!!! ?????
« Last Edit: April 30, 2017, 12:25:55 pm by patpinchin »
Pat

Miriam Vered

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #7 on: April 29, 2017, 06:49:53 pm »
The link was just the conference website. as far as I know the lecture itself hasn't been put online yet.

patpinchin

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #8 on: April 30, 2017, 12:27:57 pm »
 Thanks Miriam.  ;) :)

Must be losing it....!!!

Pat

Miriam Vered

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #9 on: August 07, 2017, 10:13:49 am »
The lecture, and the introduction to it, can be viewed on the International Society of Nephrology (ISN) website.
You have to first register here as an ISN member (registration is freely available to all).
Then, once you've registered, within the ISN site, go to ISN academy and write "Pepys" in the search bar - this brings up both the lecture and the introduction to the lecture. Alternatively this link should take you to the lectures once you've registered.


I understand that the lectures will only be freely available on the ISN site till September but I'm working on trying to arrange to put the lecture up on our NAC site.

patpinchin

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #10 on: August 07, 2017, 11:20:39 am »
Thanks Miriam.

I have been wondering what was going on.

I can watch and listen to Sir Mark's lecture, now.

I am sure it will contain his characteristic gems and be very well worth watching.  :) :)
Pat

patpinchin

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #11 on: August 10, 2017, 01:37:44 pm »
Sir Mark's lecture was awe inspiring,  mind blowing, astounding, impressive, informative........there are not enough superlatives to describe my reaction while looking at the slides Sir Mark used to explain with such clarity the mechanism of everything anyone needs to know about this remarkable new treatment which promises to clear away amyloid deposits from wherever they are in the body in every type of amyloidosis. The key to its magic  was Sir Mark's discovery of the presence of SAP in all amyloid deposits, quite early in his professional career.

In his inimitable style Sir Mark explained the history of the development of miridesap and dezamizumab from the start in 1974 to today's  phase 2 studies in the US and U.K.

If you  haven't seen Sir Mark's lecture , I urge you all to watch and listen.
Miriam's instruction are very easy to follow tho' once I installed the free ISN app, it was even easier to access.

I hope Miriam will be able to make  her father's lecture available in due course on the NAC website. I feel sure that everyone in the world affected by amyloidosis will want to watch and listen to Professor Sir Mark Pepys talking about his breakthrough new treatment which offers great hope for us all.  :) :)
« Last Edit: August 15, 2017, 07:45:36 pm by Miriam Vered »
Pat

AnnR

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #12 on: August 10, 2017, 07:09:08 pm »
The lecture was really interesting and helpful. Although obviously targeted at a medical audience it was still very accessible. It was clear, succinct and so informative. I am keeping everything crossed for a successful trial of the new drugs for people with Cardiac AL and hope I will be able to benefit in due course.

Many thanks Miriam for enabling access.

patpinchin

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #13 on: August 10, 2017, 09:23:44 pm »
I thoroughly agree Ann tho' I do not have cardiac amyloidosis.  I have an untreatable condition which this new treatment might help relieve. 14 plus years of chronic suffering has been immensely difficult to endure. I am sure that there are many NAC patients with the different types of the disease affecting multiple organs and other tissues, who like you and me feel the same way and hope one day we shall be able to benefit from this new treatment. A world first that an amyloidosis specific treatment for EVERY type of the disease is on the horizon

As I have been an NAC patient since 2005, I first learned about this treatment from Dr Gillmore in 2007. He told me then it was very exciting and promising but had a very long way to go. As Sir Mark told us in his lecture the combination treatment now has World Health Organisation approved names miridesap and dezamizumab.

Impressive is an understatement!  :)
« Last Edit: August 15, 2017, 07:56:21 pm by Miriam Vered »
Pat

patpinchin

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Re: Lecture on amyloidosis at International Society of Nephrology meeting
« Reply #14 on: August 11, 2017, 11:50:07 am »

"All Nephrologists........if you have a patient with proteinuria,
                   
                                                        THINK AMYLOIDOSIS,"

The parting comment from Professor Sir Mark Pepys in his lecture to the conference in New Mexico in April 2017 of the International Society of Nephrologists.

Have to hope that all Nephrologists present at the International conference left with
                         
                                                       THINK AMYLOIDOSIS

firmly fixed in their diagnostic thinking and that they would tell their Nephrology colleagues to do the same.

Such a simple message with an enormously positive  impact for amyloidosis if remembered by the millions of Nephrologists worldwide!  :) :)
Pat