Author Topic: Amyloidosis Patient and Family Info Day - Now Available for Viewing On Line  (Read 4678 times)

Mark McConway

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  • Posts: 70
  • Patient - AL Amyloidosis - Diagnosed 2011
  • Reason for joining: AL Amyloidosis Patient (Diagnosed at 47)
  • Diagnosed: March 2011
I've just been made aware that the various talks from the Infoday from November 2015  have just been made available for viewing online at https://www.youtube.com/playlist?list=PLFrUSNQyafhTejV5WXk4bLxQCoczilrKE

Thanks to everyone at Myeloma UK who organised the event and recorded it so that people who were unable to get to London on the day would have the opportunity of sharing in the latest developments.

Mark

patpinchin

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  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
You beat me to it, Mark......a BIG thank-you to MUK. As someone, unable to make it to the day, I will appreciate the recordings immensely.
Can't wait you watch you in action!  :) :) :)
« Last Edit: December 16, 2015, 04:31:30 pm by patpinchin »
Pat

patpinchin

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  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
As an AL Amyloidosis patient, not well enough to attend the annual Infoday, I am very grateful indeed for the 2015 recordings recently available on Myeloma UK's website.
Every year our NAC team updates us on its excellent clinical work and research. As expected Mark's personal experience entitled "From cycling to cyclophosphamide" was very engaging. No mincing of words about the tough aspects of the disease and treatment combined with his characteristic innovative and humorous touches.

 As sufferers of a rare disease we have special needs for reliable and up to date resources and information. As we know our team at the NAC leads the world for its research, diagnostic testing and advice on treatment of the disease and we are very fortunate in that respect. I was also very impressed by Eric Lowe's passionate introduction to the day. I have never heard Eric speak before so felt huge gratitude for the collaborative work he described taking place between Myeloma UK and the NAC. I am very aware the MUK is a patient driven organisation which does much good work for amyloidosis and of some of the services and resources it provides but I was not aware of the far reaching extent of its work.

Eric's explicit explanation about how important it regards its work involving all stakeholders.......patients, families, Doctors, researchers, pharmaceutical companies, politicians, drug regulatory authorities et al.....to accelerate clinical trials and new treatments for sufferers of both diseases was most enlightening. Additionally he told us that MUK leads the way in its programmes of advocacy for patients and in educating the medical community nationwide about using newly developed treatment regimes in the best way for patients. It is no surprise, therefore, that this inspirational model is the envy of other countries wanting to establish similar programmes.

Well done and thank-you to both the NAC and MUK.
« Last Edit: December 20, 2015, 04:54:28 pm by patpinchin »
Pat