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