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 This e-mail address is being protected from spambots. You need JavaScript enabled to view it or +1 919 668 1347.


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


(Last Updated Sunday, 22 June 2014 18:47)


nl6th September 2014, Pompe Disease Program, Veldhoven, the Netherlands                                                                

The day starts at 12.00 with a Lunch. From 12.00 - 14.00 hours you can visit several booths with information on equipment and information on issues related to neuromuscular diseases.

The Program:

14.00: Welcome and Opening by Wilma Treur

14.10 - 14.35: Latest developments and results of innovative treatment methods by Prof. Dr. van der Ploeg

14.35 - 15.00: Update on research on stemcelltherapie in Pompe Disease by Dr. Pijnappel

15.00 - 15.30: Results of the Pompe Survey by Drs. van der Meijden

15.30 - 16.15: Myocafé, meeting each other and sharing experiences.

16.15: Closure

(Last Updated Sunday, 20 July 2014 19:11)


auOctober 18 - 19, 2014 in Melbourne, Australia 

'The Australian Pompe's Association Inaugural Patient and Friend's Forum'

Program details will follow

maltaser clear

(Last Updated Saturday, 01 March 2014 17:19)


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