Developed through conversations with families of children with Beckwith-Wiedemann Syndrome (BWS), this coloring book includes simple illustrations and easy-to-understand descriptions of the genetic and epigenetic causes of BWS, as well as information on managing BWS. It's available in English, Spanish, Italian, Chinese, Portuguese, and Hebrew.
In this lecture, we discuss the general approach to patients with a possible cancer predisposition syndrome, review a few of the more common cancer surveillance syndromes, and discuss future directions in the field of pediatric cancer predisposition.
PJS and JPS is a free online support group for patients, family, friends, researchers and physicians, to discuss Peutz-Jeghers syndrome and Juvenile Polyposis Syndrome.
In this video, experts from Children’s Hospital of Philadelphia explain why highly specialized, comprehensive care is so important for children with Beckwith-Wiedemann syndrome.
The A-T Children's Project is a nonprofit that raises funds to support research aimed at finding life-improving therapies and a cure for ataxia-telangiectasia.
The A-T Society works to improve quality of life and care for people living with ataxia-telangiectasia while promoting research to lengthen lives and find a cure.
Beckwith-Wiedemann Children’s Foundation International is an organization that provides resources and support to families of children with Beckwith-Wiedemann syndrome.
Beckwith-Wiedemann Syndrome Support Group – U.K. supports families of children with Beckwith-Wiedemann syndrome, promotes public and professional awareness of BWS, and supports and encourages research.
GeneReviews are expert-authored, peer-reviewed disease descriptions focused on the diagnosis, management and genetic counseling for people with inherited conditions.
The Genetics Home Reference is an online guide from the National Institutes of Health designed to help you understand genetic conditions. It includes a handbook, glossary and resources.
The Gorlin Syndrome Group is a network offering guidance and information to patients, their families and caregivers whose lives are affected by Gorlin Syndrome.
The Histiocytosis Association is a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic disorders.
The Jeffrey Modell Foundation is a public charity devoted to early and precise diagnosis, meaningful treatments, and ultimately, cures for primary immunodeficiency (PI) diseases.
The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.
Neurofibromatosis Network is the leading national organization advocating for federal funding for NF research and the development of local NF organizations.
VHL Alliance is dedicated to research, education and support to improve diagnosis, treatment and quality of life for those affected by von-hippel lindau.
The XLP Research Trust exists to promote and fund research into the cause, management, symptoms and cure for X-linked lymphoproliferative syndrome (XLP).