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New Trial
Hot Alnylam News – Expanded Access
EAP – PATISIRAN -hATTR
For Hereditary ATTR Patients
w/Polyneuropathy (FAP)
Click Here!

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Anti-Body Trials Go After
the Amyloid Deposits on Organs

Prothena’s NEOD001
&
Columbia’s 11-1F4




Amyloidosis Support Groups

We are a phone call or email away!
24/7 TOLL FREE HELP/HOT LINE: 866-404-7539
OR EMAIL: Info@amyloidosissupport.com


MD, DC, VA (watch for our future meetings to be alternating at Johns Hopkins)

If you would like to talk, please call the ASG at 866-404-7539 toll free in the USA (leave a message if no one is there and you will be called back).

AMYLOIDOSIS SUPPORT GROUP MEETING
Contact Person: Paula pschmitt_98@yahoo.com or Muriel info@amyloidosissupport.com



866-404-7539 (Toll-Free)
Date: Saturday April 22, 2017
Time: 9:00 am to 3:00 pm
Location: Holy Cross Hospital
1500 Forest Glen Road
Silver Spring MD
(Follow the signs)
Comments: Guests: Dr. Prashant Kapoor Mayo/Rochester Publications
Notes on previous meetings: October 1, 2016 our guests were Dr. Jeffrey Zonder- Oncologist- Karmanos Cancer Institute
Dr. Dan Judge- Cardiologist - Johns Hopkins Hospital
Dr. John Sperati – Nephrologist - Johns Hopkins Hospital
Lori Apple - Manager, Patient Advocacy and Engagement - Alnylam Pharmaceuticals

We met at the MAIN HOSPITAL
Johns Hopkins Hospital
1800 Orleans Street
Baltimore, MD
in the Chevy Chase Auditorium.


April 9, 2016 Saturday in Silver Spring, our guest Dr. Vaishali Sanchorawala Boston University Amyloid Clinic


October 2015 guests: Dr. Janice Wiesman- Amyloidologist specializing in Neuropathy– BUMC
Dr. Dan Judge - Cardiologist; and Angie Klees, RD - Nutritionist


Our April 2015 guest was Dr. Vaishali Sanchorawala – BUMC


September 2014 guest was Dr. Vaishali Sanchorawala – BUMC


September 7, 2013 our guest was Francis Buadi MD from the MayoRochester


Saturday MARCH 9, 2013 OUR GUEST WAS John Berk MD –AL, ATTR, AA, LOCALIZED


SAT SEPT 15 2012 Our guest was Dr. Vaishali Sanchorawala – BUMC


Our guest February 25, 2012 Our guest November 5th, 2011 was Dr. Francis Buadi Mayo/Rochester


Our guest November 5th, 2011 was Dr. Nishant Tagej of the NIH. Over 20 were educated supported and happy to be there.


Our November 13, 2010 guest was Dr. Benjamin Philosophe, Director of Liver Transplantation, University of Maryland


Our March 13, 2010 guest was - Dr. Jonathan Kaufman- Emory


Our August 15th guest was - Dr. Joseph Mikhael from Mayo Phoenix his knowledge and kindness was much appreciated.


Our May guest was - Dr. Jeffrey Zonder – Karmanos/Detroit and his knowledge and kindness was much appreciated.


Our March Guest –Muriel Finkel, President Amyloidosis Support Groups Inc. www.amyloidosissupport.com was informative and interesting and fun.....


Our Guest Dr. Francis Buadi – Mayo Rochester MN fielded all questions and enlightened all attendees. There were at lot of questions on swelling and Dr. Buadi provided detailed explanation of the fluid in the blood and fluid in the cells. It was very interesting.

Pat Gibson shared that she will attend the International Symposium on Familial Amyloidosis in London next month. She said it was modeled after the Woods hole event with a Patients day. She successfully lobbied to have 30 non-medical types to have access to all sessions. She said she would share her experience at the conference at the next meeting.


Guest speaker for August 11 was Dr. Angela Dispenzieri – Mayo/Rochester

Guest speaker for May 12 WAS , Dr. Shaji Kumar - Mayo



Support Groups

FULL 2017 CALENDAR

**TTR & Familial**

AZ/Southwest (Phoenix)

Carolinas (Charlotte/Durham)

Florida (Jacksonville)

Florida (Miami)

Florida (Tampa)

Georgia/Alabama

Indianapolis/Chicago

Kansas City

Louisiana

Maryland (Baltimore/D.C.)

Maryland (Hagerstown)

Massachusetts (Boston)

Michigan/Ohio

Minnesota/Upper Midwest

Nevada (Las Vegas)

New York City

New York (Rochester)

Ohio/PA

Portland/Seattle

Philadelphia

Rocky Mountains (Denver)

Southern California (L.A.)

Texas (Dallas)

Texas (Houston)

Utah


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