At Your Coordinate Care Visits

Coordinated care visits are beneficial for families traveling to our center from out of town and may require you to stay overnight. You will participate in a visit with one of our lead WS physicians and one or more additional physicians on the same day or over multiple days, depending on the length of your stay. You may receive calls from the various departments you are scheduling with to assist in setting up your appointments with those specialists. Depending on the specialist, your appointments may take place in different buildings across the CHOP and Penn campus. Our program coordinator will provide a detailed schedule and will meet with you to help you navigate to your appointments. 

Once A Date Is Set 

Once a date is set, our program coordinator will send you a letter via the myCHOP or myPennMedicine portal with links to important information on our website for your review. If you are not set up on the myCHOP or myPennMedicine portal, inform our program coordinator so they can assist you with the setup.

Helpful Information:
  • During the scheduling process, please ignore any myCHOP or myPennMedicine notifications you receive. 
  • If you expressed interest in learning more about research opportunities at ACE-WS, our clinical research coordinator will reach out to you via your preferred contact method a few weeks before your visit.

     

One Week Prior 

Our program coordinator will reach out to you one week before your visit to:

  • Confirm your appointments. 
  • Address any questions you may have and discuss any additional coordination needed.
  • Determine if you would like to meet with the program coordinator or another team member upon arrival for assistance navigating to your appointments. If you decide not to use this assistance, rest assured that our program coordinator will be available throughout the day for any last-minute questions or support.

Following this call, a final schedule will be sent via myCHOP or myPennMedicine a few days before your appointments. While there may be minor adjustments to the order of visits, we will promptly notify you of any significant changes that could impact your travel plans.

Day Of

If you choose to meet with the program coordinator or another team member for assistance with navigation, you will do so in the Buerger Center lobby after you check in at the Giant welcome desk, 15-20 minutes before your first appointment. 

Please check in at the Giant Welcome Desk upon arrival and proceed to the elevators on the right. Head to the floor listed on your schedule above. 

Important:  Please follow the locations indicated in your schedule.

Learn more about our Clinic Information. 

 

Other Helpful Information

  • If you are a caregiver of a young child, we recommend bringing snacks and toys to keep your little one entertained during your visit. 
  • If you plan to have labs done, the phlebotomy lab is located on the first floor of the Buerger Center, just past the Giant Welcome Desk. It operates on a walk-in basis, so no appointment is needed. When signing in at the phlebotomy lab, please let them know you’d like to have all active lab orders completed, as orders from different providers might sometimes be missed or not automatically included.
  • If you  expressed interest in learning more about research opportunities at ACE-WS, our research team may approach you at some point during the day to answer any questions you might have and discuss these opportunities in more detail

After Your Visit

At the Armellino Center of Excellence for Williams Syndrome, we believe that your care extends beyond your visit. After your appointment, our team collaborates to discuss any additional referrals you may need and to ensure that your ongoing care is well coordinated. We also send an after-visit survey to gather your feedback, which is crucial for us as we strive to enhance our services and improve your experience.