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Jun 5, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

In response to Eric and others from Dr. Grogan:
“I’m going to keep working on the technology for the webinar, Google hangouts. I’ve been interested in using this forum for a virtual support group for awhile, to compliment your groups. I’ll be out of town at your 8/1 meeting, otherwise we could try it from there, basically giving people,the ability to video in, so that we could see them and they could participate ” face to face”.

We did the answers to most of the questions from today but the intern responsible for posting left early! They will get posted tomorrow”

Do remember that Dr. Grogan will be at our TTR/Familial support meeting October 21 in Chicago along with several great amyloidologists. .

Jun 4, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

Kevin,
We have face to face support meetings ..right column following link
http://www.amyloidosissupport.org/ and there are doctors at these meetings
For sharing, we have an online group http://www.AmyloidOnLine.com and are on Facebook
Now with this wonderful forum Mayo has provided we are nicely covered for sure.

Jun 4, 2015 · Video Q&A about Amyloidosis – What Patients Need to Know in Blood Cancers & Disorders

thanks to Drs. Grogan, Kapoor and Leung..do this weekly and we will be oh so happy…

Sep 5, 2013 · Besides face to face support meetings and an on line group, we in Just Want to Talk

Besides face to face support meetings and an on line group, we also have a program we call Meet Me at Mayo.
We let others with amyloidosis know when newbies or those arriving for follow ups etc will be in town so they can get together for coffee or a meal or just to talk. We want no one to feel alone. Mayo does a great job of this, but there is nothing like talking to others walking your walk. Some don’t want company and we do appreciate and respect that.

Muriel Finkel
Amyloidosis Support Groups Inc. http://www.amyloidosissupport.org
Toll Free Hot/Help 866-404-7539
http://www.amyloidosisonline.com – over 1425
http://www.familialonline.com – over 175
Member NORD http://www.rarediseases.org

Ask your doctors to stop by and see us at ASH, Booth 3000, December 7-9, 2013.

“Recycle yourself, be an organ donor!”