For Professionals
“The right and the need of each patient with WHS to receive not just the ordinary care given to any child but the extraordinary care necessary for coping with the problems of the 4p- disorder.” – John C. Carey, MD, University of Utah
The 4p- Support Group has more than 600 registered families. Medical literature cites a fraction of these numbers.
The 4p- Support Group strongly encourages medical professionals to contact the group concerning research participation.
Together with Dr. John Carey (U.S. renowned WHS expert), Dr. Amy Calhoun and other scientists, we hope to bring more awareness of this syndrome to others. Future National Conferences are planned to coincide with medical genetics conferences.
For 15 years, the 4p- Support Group has been working with Dr. Carey to develop a research agenda for WHS. At the 2010 4p- Support Group’s National Conference in Salt Lake City, Utah a priority list was developed to achieve these goals.
The 4p- Support Group is currently building an International Registry.
WHS families have participated in an array of research studies around the world. However, further medical and therapeutic research is needed.