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Infantile Pompe Patient Meeting

Author: 
Maryze
Category: Archive
Published
August 8, 2014

August 8 – 9, 2014, Lenox Baker Hospital, Durham, North Carolina, USAus

The 2nd Annual Infantile Pompe Patient Meeting has been organised by Duke University and the United Pompe Foundation.

Dr. Priya Kishnani & the Duke Pompe team will hold clinic on Thursday, August 7th & August 8th Lenox Baker Hospital in Durham, North Carolina. Limited clinic appointments are available for new & return patients. Waitlist is available.

For inquiries please contact Stephanie Austin at Stephanie.Austin@duke.edu or +1 919 668 1347.

Program:

Friday, August 8th, 2014 a Reception and Family Social will be held. Location: Hilton Garden Inn Durham Southpoint Hotel. Time: 6.00 pm – 9.00 pm

Saturday, August 9th, 2014, Infantile Pompe Disease Patient & Family Programs. Location: Hilton Garden Inn Durham Southpoint Hotel. Time: 8.00 am – 5.00 pm

The Program contains the following presentations:

  • Neuromuscular Complications & Non-invasive Surveillance
  • Physical Therapy & Assistive Devices
  • The Role of a High Protein Diet
  • Managing Speech & Swallowing Difficulties
  • Pulmonary Functioning & Sleep Characterization
  • Developmental Assessments & Cognition
  • Management of Eye Findings, Cardiac Complications & Incontinence
  • Psychological Adaption & Coping
  • Clinical Panel Q&A

 

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