“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 del(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.
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.
Over the last 12 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 now building the foundation of an international registry.
WHS families have participated in an array of research studies around the world. However, further medical and therapeutic research is needed.
Improvements in genetic testing will result in an increase in the number of WHS diagnoses and genetic chip technology advances will reveal greater detail of the human genome. Both advances will provide increased research opportunities.
The support group strongly encourages medical professionals to contact the group concerning research participation.
To request information regarding the 4p- Support Group for your department or to hand out to patient families, please email firstname.lastname@example.org. View our tri-fold brochure page 1 and page 2.
View our Scientific Advisory Board here.
For the latest GeneReview go to: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=whs
Genetics Home Reference: http://ghr.nlm.nih.gov/condition=wolf-hirschhorn-syndrome
Abstract by Shannon, Maltby and Rigby on mortality rate: http://jmg.bmj.com/content/38/10/674.abstract
Abilities of development support in children with genetic syndromes. Experiences from annual integrational meetings: http://www.ojrd.com/content/pdf/1750-1172-5-S1-P15.pdf