Support Groups
From time to time we become aware of support groups that help individuals or families with certain craniofacial deformities or syndromes. We are pleased to provide this information. If you are aware of any other support groups you would like to enter here, please e-mail the Foundation at info@worldcf.org
Help for Children and Families
Giving Hope Worldwide
Paget’s Disease
The Paget Foundation provides information and assistance for patients and medical professionals on Paget’s disease of bone and other bone disorders and conditions such as primary hyperparathyroidism, fibrous dysplasia, osteopetrosis, and cancer metastatic to bone. In conjunction with the NIH Osteoporosis and Related Bone Diseases-National Resource Center, they offer two excellent patient education booklets free of charge: (1) Questions & Answers about Fibrous Dysplasia; (2) Questions & Answers about Osteopetrosis. http://www.paget.org
Paget Foundation for Paget’s Disease of Bone and Related Disorders
120 Wall Street, Suite 1602
New York, NY 10005-4001
800-23-PAGET or 212-509-5335
Fax: 212-509-8492
Craniosynostosis
Craniosynostosis and Parents Support is an international nonprofit organization dedicated to helping families find support and information about the condition craniosynostosis. We are working to raise awareness with the general public, offer a monthly newsletter and send out care packages to the families preparing for surgery. Visit our Web site at http://www.cappskids.org/
Craniofacial Anomalies
http://www.worldcf.org/our-kids/georgette-couvall/
I was born (10/16/75) with a craniofacial deformity that included nasal, forehead, and cheekbone deformity as well as the absence of my right eye. I’ve had approximately thirteen surgeries and I’m very happy with the outcome. Thanks to my craniofacial/cleft Surgeon (Dr. Kenneth E. Salyer) and my family, I’m now living a normal life. Dr. Salyer has not only made a medical miracle for me, but has also done the same for many other craniofacial, cleft and craniopagus (conjoined at the head) patients from all over the world. I love him like I love my own family. He is the best. If you are a patient or a family member of a patient and would like to contact me, my e-mail is georgettecouvall@hotmail.com.
Oral and Maxillofacial Surgeons – Cirujanos del Mundo
www.cirujanosdelmundo.com
Apert, Crouzon, and Pfeiffer Syndromes
http://www.worldcf.org/medical-info/craniofacial-resources/aperts-syndrome/
Parry Romberg Syndrome
I would like to make you aware of the Romberg’s Connection Support Group. Our web site address is: www.geocities.com/HotSprings/1018/index.html Our group was formed in June of ‘97 for those affected by Parry Rombergs Syndrome. Rombergs is a very rare disorder causing facial deformity as well as many other problems. A description of Rombergs is on the NORD web site (click here): We started out with 2 members and now have over 400 members in many parts of the world. Our group is here as a means of support for those of us with this disorder, and to share any information that we have about it. – Marilyn, ggneal@cfu.net
About Face
www.aboutfaceinternational.org
American Cleft Palate-Craniofacial Association/Cleft Palate Foundation
ACPA Web site
International Society of Craniofacial Surgery
International Society of Craniofacial Surgery
Jylian Bilbow
Jylian Bilbow’s Web site
Support Group/Foundation for Children with Apert Syndrome
Taylor Wilson Foundation
