Pompe's
Disease Communication Program
The AMDA Teleconference Program facilitates the
exchange of information between the Pompe patient
community and professionals that have expertise in the
field.
Programs that have been provided to date
follow. To hear recordings or read transcripts of
the available proceedings, please click on the
links below. (Right click on
above link, then choose "save target
as" to save on your computer. Will take
about 3+ minutes, depending on your connection
strength)
The date, time, and subject of future teleconferences
will be announced by “snail” mail several weeks
prior to the event (as well as on GSDnet). To join the
GSDnet, click
here. Please register with AMDA at: http://www.amda-pompe.org
To Participate:
1-800-861-4084
Code: 1041827#
Amicus Conference Call
Topic: Amicus Pompe Summit
Mark Lyles, M.D., Jayne Gershkowitz, and Tina Sellers from Amicus
Monday, April 14, 2008 at 7:00 PM CST
Recording
Expanded Newborn Screening Teleconference
How to advocate for newborn screening initiatives in your state
Bob Evanoski from the Evanoski Foundation
Monday, January 21, 2008 at 7:00 PM CST
Recording
Patient to Patient Teleconference
Let's learn from each other!
Conference Call Leader: Marsha Zimmerman,
AMDA Patient Coordinator
Tuesday October 3, 2006 at 7:00 PM CST
Second Teleconference on Insurance
Issues
Getting Insurance Coverage for a Newly Approved
Drug
Christin Engelhardt from the Health Assistance
Partnership (http://www.healthassistancepartnership.org)
Tuesday March 21, 2006 at 7:30pm CST
Powerpoint
Presentation available
Recording
Mentoring
How to communicate and counsel others dealing with
Pompe Disease
Debbie Oliver from the Cleft Palate
Association
Thursday, June 16th, 2005 8:30 pm EST
Physical /Exercise Therapy
Dawn Phillips and Debbie Cogswell—Duke
University
Tuesday, March 22nd, 2005 8:30 pm EST
Recording
Second FDA Teleconference
John Hyde, M.D., Medical Team Leader at FDA
Thursday, January 27th, 2005 8:30 pm EST
Transcript
Recording-part
1
Recording-part
2
Special Trust Funds
Theresa Varnet
Thursday, October 28th, 2004 8:30 pm EST
Transcript
Recording
Gene Therapy
Dr. Barry Byrne
Tuesday, August 31st, 2004 8:30 pm EST
Transcript
Recording
The Prevention of
Respiratory Complications in Pompe's Disease
Dr. John Bach
Monday, June 21, 2004 8:30 pm EST
Transcript
Recording
Insurance Issues
Tricia Sawayer, RN, CCM
Tuesday, May 25th, 2004 8:30 pm EST
Summary
Gene Therapy
Dr. Andrea Amalfitano
Tuesday, March 23rd, 2004 8:30 pm EST
Transcript
Recording
Nutrition and Exercise
Therapy for Pompe Disease Patients
Dr. Alfred Slonim and Linda Bulone
Tuesday, January 27th, 2004 8:30 pm EST
Summary
Highlights of
IPA/German Conference in Heidelberg, Oct. 31-Nov. 2, 2003
Thursday, November 13th, 2003 7:00 pm
EST
Summary
Overview of FDA
Regulatory Process
Tuesday, September 30th, 2003 from
7:00 pm EST
Summary
Tentative Future Topics
Include:
Regulatory Approval Process Leading up to New Drug
Application
For more information
contact Marsha Zimmerman at:
m.zimmerman@amda-pompe.org
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