Cancer Predisposition Program Resources
Beckwith-Wiedemann Syndrome Coloring Book [PDF]
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.
Educational Materials for Practitioners
Cancer Predisposition and Surveillance in Children and Adolescents
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.
Support and Education Groups
Peutz-Jeghers Syndrome and Juvenile Polyposis Syndrome Online Support Group
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.
Proteus Syndrome Foundation
The Proteus Syndrome Foundation supports and educates families and professionals, and fundraises for proteus syndrome research.
Caring for Children with Beckwith-Wiedemann 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.
A-T Children's Project
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.
Ataxia Telangiectasia Society
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.
BCCNS Life Support Network
BCCNS Life Support Network provides information for children and adults with Basal Cell Carcinoma Nevus Syndrome, an inherited genetic disorder.
Beckwith-Wiedemann Children’s Foundation International
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.
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.
Children's Tumor Foundation: Ending NF Through Research
The Children's Tumor Foundation is dedicated to improving the health and well-being of individuals and families affected by neurofibromatosis.
Coalition for Genetic Fairness
It addresses the growing concern surrounding the misuse of genetic information in health insurance and employment decisions.
GeneReviews are expert-authored, peer-reviewed disease descriptions focused on the diagnosis, management and genetic counseling for people with inherited conditions.
Genetics Home Reference — Beckwith-Wiedemann syndrome
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.
Gorlin Syndrome Group
The Gorlin Syndrome Group is a network offering guidance and information to patients, their families and caregivers whose lives are affected by Gorlin Syndrome.
Histiocytosis Association of America
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.
International WAGR Syndrome Association
The IWSA is a network of families, healthcare professionals, educators and others who care for someone with WAGR syndrome.
Jeffrey Modell Foundation/National Primary Immunodeficiency Resource Center
The Jeffrey Modell Foundation is a public charity devoted to early and precise diagnosis, meaningful treatments, and ultimately, cures for primary immunodeficiency (PI) diseases.
Li-Fraumeni Syndrome Association
LFS Association provides a wide range of information, advocacy and support services for individuals and families with Li Fraumeni Syndrome.
Medline Plus — Beckwith-Wiedemann Syndrome
Medline Plus is the National Institutes of Health's website for patients and their families and friends.
National Cancer Institute — Wilms Tumor and Other Childhood Kidney Tumors
The National Cancer Institute is the nation's trusted source of information about Wilms tumor and other types of childhood cancers.
National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.
National Wilms Tumor Study
National Wilms Tumor Study is a non-profit federally funded research study.
Neurofibromatosis Network is the leading national organization advocating for federal funding for NF research and the development of local NF organizations.
The NF2 Crew is an online support community for patients and family members (and other loved ones) with neurofibromatosis type 2.
The Genetic Information Nondiscrimination Act (GINA)
GINA is a federal law designed to protect people in the United States from genetic discrimination in health insurance and employment.
The International Pleuropulmonary Blastoma Registry
It provides information for families, physicians and caregivers on pleuropulmonary blastoma (PPB), a rare childhood chest tumor.
Von Hippel-Lindau (VHL) Alliance
VHL Alliance is dedicated to research, education and support to improve diagnosis, treatment and quality of life for those affected by von-hippel lindau.
XLP Research Trust
The XLP Research Trust exists to promote and fund research into the cause, management, symptoms and cure for X-linked lymphoproliferative syndrome (XLP).