Rare Disease Report

Duke's Pompe Family Clinic and Meeting

FEBRUARY 20, 2017
Lauren Bailey

Lauren Bailey, MS, CGC at Duke University talks about the upcoming patient meeting for Pompe disease being held April 6-8, 2017.

For more information about the upcoming meeting, click here


In April of 2017, Duke will be hosting a Pompe family clinic and family meeting. It is the fourth or fifth year that we've done this for the late onset community and it consists of two full days of clinic where patients are allowed to come and see genetics physical therapy cardiology pulmonology any other specialty that they find necessary for them. That's Thursday and Friday and then Friday evening we do family get together where we basically have breakout sessions where the families can discuss their own personal journeys or diagnosis, their thoughts, fears, concern. They talk to other families who have gone through the same thing. 
On Saturday we hold a full-day meeting where all of our sub specialists from Duke from all of the different departments — genetics, physical therapy, speech, cardiology, pathology, and OT management do presentations on what is going on in the field of Pompe within their sub-specialty. And what studies are upcoming and wait is the next wave of treatment or the next wave of managing Pompe as a multidisciplinary condition.
This will be my third year attending and it's a really great event to get families in a room together to really discuss their fears, their concerns, their joys, and learn about what's going on in the field of Pompe and get all of the experts in one room to get all of your questions answered.
It's a really great event so that will be held at Duke April 6th, 7th, and 8th of 2017 and you're welcome to contact myself or any information I can be reached by email at Lauren.Bailey@duke.edu

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