Schedule

Join us for XLH Day on October 6-7, 2017 in Connecticut!

You will meet other families dealing with XLH, discuss the challenges, learn how others cope, and develop new strategies for managing your own or your child’s symptoms. There will be a casual Meet and Greet on Friday evening at the Frank H Netter MD School of Medicine, as well as a dinner gathering on Saturday evening at Wharton Brook State Park, and a Walk/Run fundraiser on Sunday morning. In between, the activities will include an educational program for adults and older children, age-appropriate educational and social programs for children (6-12) and for teens. Infant/toddler care will also be available.

Registration will begin July 9, 2017, at XLHDay.org, and end on September 17, 2017. Registration is free, but required to attend!

The speakers will include:

Laleh Ardeshirpour, MD
Dr. Ardeshirpour, a pediatric endocrinologist, is a member of the clinical team at Yale’s Center for X-Linked Hypophosphatemia. She is also an assistant professor with the Yale University School of Medicine.

 

Michael A. Campbell, MD, FAAOS
Dr. Campell is an orthopaedic foot and ankle surgeon with Atlantic Orthopaedic Specialists. He specializes in the treatment and surgery of the foot and ankle as well as general orthopaedics.

 

Thomas O. Carpenter, M.D.
Dr. Carpenter is the director of the Yale Center for X-Linked Hypophosphatemia and the physiology Core of the Yale Core Center for Musculoskeletal Diseases.

 

Miriam S. DiMaio, MSW, ABMG
Miriam S. DiMaio is certified in genetic counseling by the American Board of Medical Genetics., and is on the faculty at the Frank H. Netter MD School of Medicine at Quinnipiac University.

 

Maya Helene Doyle, PhD, LICSW-R
Dr. Doyle is an assistant professor of Social Work at Quinnipiac University’s School of Health Sciences.

 

Karl Insogna, MD
Dr. Insogna is a Professor of Medicine at Yale University School of Medicine and an internationally recognized expert in the field of metabolic bone disease.

 

Eva S. Liu, M.D.
Dr. Liu is an endocrinologist at Brigham and Women’s Hospital in Boston. Her clinical interests include metabolic bone disease and osteoporosis, with an emphasis on rare skeletal disorders.

 

Carolyn M. Macica, PhD
Dr. Macica is an associate professor of medical sciences at the Frank H. Netter MD School of Medicine at Quinnipiac University and a professor of pharmacology at Yale University.

 

Yves Sabbagh, PhD
Dr. Sabbagh is the Research and Development Director for Rare Diseases at Sanofi Genzyme focusing on genetic bone diseases, and the curator for the PHEX mutation database.

 

Keith Steigbigel, PT, DPT, CSCS
Dr. Steigbigel is a physical therapist with Physical Therapy & Sports Medicine of Milford. He specializes in difficult and unresolved cases. He also teaches part-time as a clinical professor at Quinnipiac University in the department of Physical Therapy as well as at the Frank H. Netter MD School of Medicine.

 

We hope you’ll join us to build a bigger and better Network for individuals with XLH and their families.

Special thanks to Dennis Barbon, RN, who designed this year’s XLH Day logo. He is currently a third-year medical student at the Frank H. Netter, MD School of Medicine at Quinnipiac University. During his undergraduate studies at University of Miami, he completed degrees in medical business administration and nursing. Additionally, Dennis has studied fine art for nearly two decades and uses his art skills to educate patients and peers.

 

PRELIMINARY AGENDA

 

Friday evening, October 6, 2017

Sign in, get name tags, program packets, eat some food, play a game, and meet others with XLH. Please note, this is an informal gathering, so you can stay as little or as long as you wish.

Frank H Netter MD School of Medicine, Quinnipiac University

370 Bassett Road, North Haven, CT

 

Saturday, October 7, 2017

Daytime

Education programs for adults

Simultaneous children’s activities and child care

Frank H Netter MD School of Medicine, Quinnipiac University

370 Bassett Road, North Haven, CT

 

Evening

Networking and an informal meal at the Main Gazebo at Wharton Brook State Park. You can stay as little or as long as you wish.

Wharton Brook State Park

Wallingford, CT

 

Sunday, October 8, 2017

Morning

Walk/Run fundraiser

Farmington Canal Heritage Trail

940 Whitney Avenue, Hamden, CT

https://xlhnetwork.networkforgood.com/projects/29363-1st-annual-walk-run-for-xlh