Happy summer to all! We first want to thank everyone for their patience and understanding as our team finalizes details for the upcoming 2022 Pediatric Pompe Patient Meeting to be held in person August 5-6, 2022. Please read this in its entirety for important information about the meeting. If you still would like to register for the meeting, please do so here: https://duke.qualtrics.com/jfe/form/SV_3aC7C8G0bEheEd0

  1. Virtual Option: As of right now, the meeting is expected to be held fully in person at the Sheraton in Durham, NC. Our team is actively working on ways to livestream this event to create a virtual way to watch the conference. Please note that the virtual component will probably NOT be on the same platform as in recent years and may not be available live. We will provide information on the virtual option when/if it becomes available.
  2. Clinic Appointments: Clinic appointments with Dr. Kishnani are FULLY BOOKED at this time. As expected, we received a huge number of requests and unfortunately, we were not able to offer appointments to all who sent in a request. For those who were not able to complete the form, it is likely the request form was closed by the time you opened it, as we closed it as soon as we felt we had reached capacity. That being said, some individuals who completed the form did not get their requested appointments, and for this we apologize if we were unable to offer you an appointment. If you would like to be scheduled for a different clinic day in the future, please let us know ASAP.
  3. Hotel: We learned there was an issue with the previous hotel reservation link that was posted on our Facebook page last week. The room block is for Friday, August 5 and Saturday, August 6 ONLY. We were not able to secure a room block for Thursday night as the hotel was already heavily booked; there may still be some rooms left, but not at the discounted rate. The Sheraton is currently undergoing some construction and thus our room blocks were a bit more restricted this year than in years past. You may make a reservation using this link, taking care to adjust your dates accordingly: Book your group rate for Duke Pediatric Pompe Meeting 2022We expect these rooms to go fast. The last day to book is July 11, 2022.
  4. Agenda: The agenda is being finalized and will be distributed as soon as all speakers have confirmed.

Please feel free to send us any additional questions directly to this email address: dukepompemeeting@nullduke.edu. We are happy to assist you and once again thank you for your patience as we plan our first in person meeting in 3 years! We are so looking forward to seeing you all.  


The Duke Pompe Team

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