Childhood Illnesses

Wide Smiles! Cleft Lip & Cleft Palate Resource
Wide Smiles: Cleft Lip and Palate Resource was formed to provide "support, inspiration, information and networking for families everywhere who may be dealing with the challenges associated with clefting". This web site provides a guide to doctors and clinics, an E-mail discussion list for those who wish to talk with other individuals dealing with the same issues, and also a photo gallery of before and after pictures of children and adults with cleft lip and palate.

Cleft Palate Center
The Cleft Palate Craniofacial Center is located at the University of Pittsburgh. The mission of the Cleft Palate Center is to "treat children with cleft palate and craniofacial problems and help families overcome their complex emotional challenges". Information regarding facts of cleft palate and other craniofacial anomalies, research and education, and an overview of the Cleft Palate Craniofacial Center at the University of Pittsburgh can be accessed through this web site.

Cystic Fibrosis Foundation
"The mission of the Cystic Fibrosis Foundation is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.". The Cystic Fibrosis Foundation web site provides a definition of Cystic Fibrosis, research highlights, publications, clinical trials, Cystic Fibrosis services, and how to get involved with the Cystic Fibrosis Foundation.

Cystic Fibrosis
The Cystic Fibrosis (CF) web page provides information regarding CF for doctors, researchers, and the non-technical reader. In addition it supplies links to CF sites world-wide, the Cystic-L community page, support groups, CF conferences, and CF fundraisers.

Cystic Fibrosis Genetic Testing
The Cystic Fibrosis Genetic Testing web site provides a family guide to information regarding CF. Questions such as - what is CF?; how CF affects the body?; what causes CF?; what are the chances of being a CF carrier or that a child will have CF?; and what are the benefits and how to's of genetic testing?- can be answered at this site.

Muscular Dystrophy Association (MDA)
"The Muscular Dystrophy Association is the definitive source for news and information about 40 neuromuscular diseases, MDA research and services available to adults and children with neuromuscular diseases and their families." Special information regarding research, services, clinics, diseases, donations, publications, questions for the experts, ways to help and telethon information are available through this web site.

Duchenne Muscular Dystrophy Research Center
The DMD Research Center, Duchenne Parent Project, and the DMD Information Network can be accessed through the Duchenne Muscular Dystrophy Research Center web site.

Spina Bifida Association of America (SBAA)
"Spina Bifida Association of America is comprised of individuals with spina bifida, family members, parents, professionals, adults with spina bifida and interested members of the general public. The Mission of the Spina Bifida Association of America is to promote the prevention of spina bifida and to enhance the lives of all affected." Information included through the SBAA home page include the group member directory, scholarship fund, facts about spina bifida, legislative issues, membership, publications and services, and research data.

Spina Bifida / Syrinx / Hydrocephalus at Massachusetts General Hospital Harvard Medical School
The spina bifida/syrinx/hydrocephalus homepage at Massachusetts General Hospital Harvard Medical School contains information on pediatric neurosurgeons and myelodysplasia/ spina bifida. In addition, there is a guest book located at this site which allows for visitors of the site to make comments and suggestions. Furthermore, there is the option to access other sites through the Pedi Link connection.

Neurofibromatosis, Inc.
The Neurofibromatosis, Inc. is an organization that provides support and services to NF families. "In addition to assisting individuals and families, NF, Inc. works closely with clinical and research professionals who specialize in the treatment of NF." A description of NF, resources, current events, and how to contact the Inc. are some of the links that can be connected from this home page.

The National Neurofibromatosis Foundation, Inc.
The National Neurofibromatosis Foundation, Inc. Homepage includes information for patients and families on current news, defining NF, diagnosing and management of NF1 and NF2, finding NF clinics, clinical programs, research programs, online resources, newsletters and publications, and a race to find a cure link.

Neurofibromatosis Resources
This Neurofibromatosis Resource page was developed by a woman whose loved one has neurofibromatosis. Through this site, there are specific links for information regarding Type 1 and Type 2 NF, children and adolescents, associated conditions, photographs, research and diagnosis, newsgroups, and personal homepages by individuals who have or know someone who has neurofibromatosis.

Osteogenesis Imperfecta
The Osteogenesis Imperfecta web page is supplied by the University of Washington Department of Orthopedics and Bone and Joint Center, the Washington State Chapter of the Arthritis Foundation, the Lockwood Foundation, Prosthetics Research Study, and KTZZ TV. This web page on Osteogenesis Imperfecta provides a brief overview of this bone disorder.

Osteogenesis Imperfecta Foundation, Inc.
"The Osteogenesis Imperfecta Foundation's mission is to improve the quality of life for individuals affected by OI through research to find a cure, education, awareness, and mutual support." Detailed information on OI research, resources from the OI Foundation, advocacy, child abuse allegations, support groups, OI Foundation membership, newsletter, how to help, and how to contact the OI Foundation is provided at this site.

Sickle Cell Information Center
"The mission of this site is to provide sickle cell patient and professional education, news, research updates and world wide sickle cell resources. It is the mission of our organizations to provide world class compassionate care, education, counseling, and research for patients with sickle cell disease." This site allows for information to be obtained regarding sickle cell anemia aimed for health care providers, patients and families, teachers and employers. In addition, newborn screening information, blood banks and donors, pharmaceutical companies, and world wide resources are provided.

Joint Center for Sickle Cell Thalassemia
The Joint Center for Sickle Cell and Thalassemic Disorders is located at Massachusetts General hospital. From this location, information regarding Sickle Cell/Thalassemia and telemedicine consultation can be found. In addition, links can be made to Massachusetts General Hospital Hematology/oncology, the Connective Tissue Center, and the Bone Marrow Transplant Program.

The Pediatric AIDS Foundation
The Pediatric AIDS Foundation is the only organization conducting research exclusively for children. This site provides information about the Pediatric AIDS Foundation (PAF), facts for pregnant women, PAF newsletters, HIV/AIDS links, photographs, how to volunteer, and how to make a donation.

PedLynx
This pediatric database provides information and various links to over 550 childhood illnesses. "Information on each disorder in this Database has been obtained from at least 3 sources including Nelson Textbook of Pediatrics (14th and 15th editions), the Birth Defects Encyclopedia (1990 and 1994 editions) and from at least one other source (journal articles, review articles, textbooks)."