Author Topic: The Amyloidosis Research Consortium.  (Read 5648 times)


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  • AL - extensive in skin. mouth + palatal nerves '04
The Amyloidosis Research Consortium.
« on: October 14, 2015, 01:33:46 pm »
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, 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.
« Last Edit: October 14, 2015, 02:16:52 pm by patpinchin »


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Survey for AL Amyloidosis sufferers
« Reply #1 on: October 16, 2015, 03:44:15 pm »
A request from The Amyloidosis Research Consortium.
To all with AL Amyloidosis:
Please take 5 minutes to complete this.

"With many new drugs in trial for the first time in the amyloidosis world we are all compelled to get them approved and available for patients, ASAP.   The FDA wants to see the data and the patient voice is crucial in enabling this to happen".

This survey, although from Prothena (the NEOD011 Pharma company ), will help all drugs in their path forward.  With the formation of The Amyloidosis Research Consortium, an international initiative, the centres of excellence including our own NAC are working collaboratively to further drug development.

 Please help if you have not already done so by completing the survey.
When you log in click "new user" and choose a user ID and password then away you go.


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  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: The Amyloidosis Research Consortium.
« Reply #2 on: October 18, 2015, 12:42:18 pm »
Thanks Pat.

Good to hear about the Amyloidosis Research Consortium. Look forward to their webcast.

I have ATTR and not AL amyloidosis, but hopefully those forum members who have, will take part in the survey. If the data helps in new drug development, it will be 5 minute well spent.
Slainte Mhath,


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  • Posts: 49
  • Reason for joining: AL Amyloidosis - skin/Soft tissue involvement
  • Diagnosed: 03/2013
Re: The Amyloidosis Research Consortium.
« Reply #3 on: October 18, 2015, 05:35:14 pm »
Thanks a lot Pat for this post!
I appreciate your efforts.

I have taken the survey. Hopefully it will helpful.

Thanks again