National Amyloidosis Centre Patient Forum

Amyloidosis => Patient information events => Topic started by: Miriam Vered on October 12, 2018, 03:34:06 pm

Title: ATTR amyloidosis Infoday
Post by: Miriam Vered on October 12, 2018, 03:34:06 pm
The National Amyloidosis Centre is holding an ATTR Amyloidosis Patient and Family Infoday on Friday 25 January 2019, 10am-3pm , in the Royal Free Hospital Atrium. For further details see attached flyer.
Title: Re: ATTR amyloidosis Infoday
Post by: Miriam Vered on April 30, 2019, 11:18:34 am
On 25 January 2019, the inaugural ATTR Patient and Family Info Day was held at the Royal Free Hospital. The day was well attended: The Atrium conference venue at the Royal Free was filled to capacity by 130 attendees – patients and their relatives and friends. The day was organised by the UK ATTR Amyloidosis Patients’ Association (UKATPA). The morning involved some formal talks – speakers included Profs Hawkins and Gillmore from the NAC and Prof Reilly from the National Hospital for Neurology and Neurosurgery in London. Break-out sessions in the afternoon focussed on particular relevant topics and enabled discussion and sharing of information in smaller groups. The day was managed by NAC staff volunteers. Here are some videos from the day:
A promotional / montage video of the day (https://vimeo.com/317481337/918df6fe93)
An interview with David and Sue Gregory (https://vimeo.com/319936546/cb020140ec)
Professor Hawkins’ presentation from 25 Jan (https://vimeo.com/316786296/d8535a3c00)
Professor Gillmore’s presentation from 25 Jan (https://vimeo.com/316803674/f9a945459d)
Dr Lane’s presentation from 25Jan  (https://vimeo.com/316842926/3807b22ad7)
Carlos Heras-Palou presentation from 25 Jan (https://vimeo.com/317229534/19804b9b5e)
Local press article about the infoday (https://www.times-series.co.uk/news/17410298.rare-disease-seminar-held-for-patients-and-carers-at-royal-free-hospital/)
Title: Re: ATTR amyloidosis Infoday
Post by: Micky on May 06, 2019, 11:40:18 am
I thought Prof Gillmore gave a presentation on treatments and future research for ATTR. I couldn't find it in the package here.
Title: Re: ATTR amyloidosis Infoday
Post by: Miriam Vered on May 06, 2019, 01:15:24 pm
Hi Micky, I'll look into it and get back to you.
Title: Re: ATTR amyloidosis Infoday
Post by: Dave Morris on May 06, 2019, 03:39:23 pm
Very informative presentations covered on the videos of the special meeting but would have liked to see Professor Gilmores speech on latest exciting developements.
Title: Re: ATTR amyloidosis Infoday
Post by: Miriam Vered on May 07, 2019, 09:45:43 am
I've been told that unfortunately there was a technical problem with that video. We may be able to share Prof Gillmore's presentation slides at a later date.
Title: Re: ATTR amyloidosis Infoday
Post by: Graham Davey on May 07, 2019, 10:42:22 am
Has anyone seen the latest news from the USA on the successful trails of Vyndaqel and Vyndamax. Does this give us hope ?

Title: Re: ATTR amyloidosis Infoday
Post by: Miriam Vered on May 20, 2019, 10:18:14 am
The results of the vyndaqel and vyndamax (tafamidis) trials and of recent trials of genetic based therapies for ATTR amyloidosis (patisiran and inotersen) are definitely very encouraging and do give hope for ATTR amyloidosis patients.
On the basis of the results from the recent tafamidis trial, the U.S, the Food and Drug Administration (FDA) have approved tafamidis for cardiomyopathy caused by ATTR amyloidosis although it is not approved for ATTR polyneuropathy in the US.
Tafamidis is approved in Europe for treatment of hereditary ATTR amyloidosis patients with neuropathy but it is not currently available within the NHS, and approval in the EU of tafamidis for cardiomyopathy is expected shortly. It will need to be evaluated by NICE before it can become available within the NHS.
The genetic therapies patisiran and inotersen trials showed that these drugs have efficacy in treating patients with ATTR amyloidosis and neuropathy. They have both been approved in Europe and in the US for treating neuropathy in ATTR amyloidosis and are currently being appraised by NICE for use within the NHS.
 
 
Title: Re: ATTR amyloidosis Infoday
Post by: Miriam Vered on May 24, 2019, 08:52:03 am
You can view the slides from Professor Gillmore's presentation at the Infoday here (https://ttramyloidosis.uk/wp-content/uploads/2019/05/Prof-Gillmores-Presentation-Treatment-of-ATTR-amyloidosis-25Jan2019.pdf) or in the attached PDF.