Beckwith-Wiedemann Syndrome Resources

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 video, experts from Children’s Hospital of Philadelphia explain why highly specialized, comprehensive care is so important for children with Beckwith-Wiedemann syndrome.

http://www.beckwithwiedemann.org

Beckwith-Wiedemann Children’s Foundation International is an organization that provides resources and support to families of children with Beckwith-Wiedemann syndrome.

https://www.bwssupport.com/

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.

https://www.changingfaces.org.uk/

Changing Faces provides support and promotes respect for everyone with a visible difference. Helpful resources include advice for meeting new people when you have a visible difference.

http://www.ccakids.com

The Children's Craniofacial Association empowers and gives hope to individuals and families affected by facial differences.

http://www.geneticfairness.org/

It addresses the growing concern surrounding the misuse of genetic information in health insurance and employment decisions.

http://www.faces-cranio.org

FACES: The National Craniofacial Association assists children and adults who have craniofacial disorders resulting from disease, accident or birth.

http://www.ncbi.nlm.nih.gov/books/NBK1116/

GeneReviews are expert-authored, peer-reviewed disease descriptions focused on the diagnosis, management and genetic counseling for people with inherited conditions.

http://ghr.nlm.nih.gov/condition/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.

https://www.nlm.nih.gov/medlineplus/ency/article/001186.htm

Medline Plus is the National Institutes of Health's website for patients and their families and friends. 

http://www.cancer.gov/cancertopics/types/childhoodcancers

NCI's website includes links to information about treatment, clinical trials, testing and research.

http://www.rarediseases.org/

The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.

http://www.phillyphaces.org/

Philly Phaces provides peer support, advocacy, and resources to help Philadelphia-area children facing appearance differences from craniofacial abnormalities and cleft lip and palate.

http://stupidcancer.org/

Stupid Cancer is an all-inclusive young adult cancer community that empowers those affected by young adult cancer.

http://ghr.nlm.nih.gov/spotlight=thegeneticinformationnondiscriminationactgina

GINA is a federal law designed to protect people in the United States from genetic discrimination in health insurance and employment.