Attention all AL Amyloidosis and ATTR sufferers.
I have been asked by Isabelle Lousada, if I would post the following information. Isabelle has recently formed the US Amyloidosis Research Consortium. She is its President & CEO. The NAC as a centre of excellence, is one of the 5 founder members.
The Amyloidosis Research Consortium is hosting an amyloidosis meeting on 16th November. The meeting is being live streamed and will be available for us here to view. This is a critical meeting for AL and ATTR amyloidosis and will consist of representatives of the FDA and world experts talking about the disease, with patients sharing their experiences. There will also be panel discussions to define patient needs and clinical trials that will work for us. To learn more about the work of ARC visit
www.arci.org, and sign up for the newsletter at the bottom. I urge you to do both. Very readable impressive information.
I will post the link to the webcast when it becomes available.
Isabelle told me that she is working with a number of the European groups, as they develop the INTERNATIONAL CLINIAL TRIAL NETWORK. The plan will be to do a similar meeting with European Medicines Agency, which designated Sir Mark's drug for fast tracking. They are working with the EMA now to get their attendance at the Nov 16th meeting in the US. In the next month Isabelle will be in Europe at two amyloidosis meetings and talking about patient needs etc., so the work the ARC is doing is definitely not limited to the US.
This is outstanding collaborative work which I am sure will hugely benefit us all in the area of amyloidosis research and drug development. The initiative very much deserves our support.
