Thursday, August 29, 2013

Registration XLH Day 2013

Quinnipiac University
Frank H. Netter MD School of Medicine
370 Bassett Road North Haven, CT 06473

Thank you to everyone who preregistered!   Preregistration helped us with planning, estimating costs, and securing appropriate resources for the event.  Official registration is now open and will continue through September 15. 

Even if you preregistered, we kindly ask you to officially register for the XLH Day event.

  Adult: $20
  Children under 12: $15
Cost covers admission to the event and all meals.   The cost is the same for attending one or both days.

Payment can be made by personal check, PayPal, or by credit card through PayPal. 
Payment must be made in advance.  Payment will not be accepted at the door.
Personal checks should be made out to “The XLH Network” and mailed to:

  Bill Coogan
  Treasurer, The XLH Network
  9 Crestview Dr.
  Brookfield, CT 06804

A link at the end of the registration process will take you to a secure PayPal site for payment by PayPal or credit card through PayPal.

A limited number of registration fee stipends are available for XLH Network Members that need assistance due to income limitations.  Contact Bill Coogan for further information.

Once registration is completed, you should receive an automated confirmation via email.  If you need additional assistance, or are having difficulty, or do not receive the confirmation, please do not hesitate to email the registration coordinator  at, or call at  610.799.6278.

Official registration is open through September 15.  Registration on site at XLH Day will not be available.

NOTE, at the end of the registration form is a section for REGISTRATION FEES.   To activate the registration and enable the Submit button you must use the pull-down menu and select any number other than 0.

XLH Day Events include:

Educational Panel of Distinguished Experts

Dr. Thomas Carpenter (Yale University, Pediatric Endocrinology) Dr. Ingrid Holm (Children's Hospital Boston, Pediatric Endocrinology and Genetics) Dr. Margaret Seton (Massachusetts General Hospital, Rheumatology) Dr. Carolyn Macica (Quinnipiac University, Frank H. Netter School of Medicine, Medical Sciences) Dr. Melinda Sharkey (Yale University School of Medicine, Pediatric Orthopedic Surgery) Dr. Regina Goetz (New York University, Research Scientist, Biochemistry & Molecular Pharmacology) Dr. Raghbir Kaur (Yale-New Haven Hospital, Pediatric Dentistry)

Occupational Therapy/ Physical Therapy Rehabilitative Panel

We are introducing this exciting NEW addition to XLH Day this year. The Rehab Panel will focus on rehabilitation skills and services available to clients of all ages.

Concurrent to the Educational Panel, there will be Pediatric Sessions for Ages 8-18 years

"The ABCs of XLH" (Dr. Laleh Ardeshirpour, Pediatric Endocrinologist, Yale University School of Medicine) "Healthy Smiles" (Dr. Leslie Blackburn, Pediatric Dentist, Yale-New Haven Hospital) "Pediatric Physical Therapy" (Christina Rao, Yale-New Haven Hospital) "Healthy Snack Demo and Nutrition Presentation" - TBA

Magic Show for All Ages by The Great  Leone

Please visit for the full schedule of events, speaker biographies, to submit questions for "Ask the Experts," and more!

XLH Day "Kick-Off" Dinner and Social
September 21 at 6:00-9:00 p.m.

XLH Day Educational Session
September 22, 2013
Registration: 9:00 a.m.
Interactive Panels: 10 a.m.- 4:30 p.m.
Lunch Break: Noon-2:00 p.m.