Search Results: MCH Organizations

Annotation: AboutFace is an international organization providing information services, educational programs, and emotional networking support to individuals with facial disfigurements and their families. Membership includes children, adults, and families affected by facial differences, health care and social service providers, dental professionals, and educators. Publications include a bimonthly newsletter, brochures and booklets on medical conditions, treatment issues/plans and socialization issues etc., and a series of educational programs for elementary schools.

Keywords: Apert syndrome, Cleft lip, Cleft palate, Congenital port wine stain, Craniofacial abnormalities, Crouzon syndrome, Goldenhar syndrome, Naevus flammeus

Annotation: The American Cleft Palate-Craniofacial Association (ACPA) optimizes the interdisciplinary care of individuals affected by cleft lip, cleft palate, and other craniofacial anomalies. ACPA’s website provides information and resources for health professionals and also links to the Cleft Palate Foundation’s website for clients and their families. ACPA provides professional education and organizes meetings. The website includes news and information about ACPA’s journal, the Cleft Palate-Craniofacial Journal; programs; research committees; and grants.

Keywords: Cleft palate, Craniofacial abnormalities, Medical societies

Annotation: The BPES Family Network is an international, non-profit, self-help group established in 1994 to offer encouragement, understanding and information for individuals and families affected by the rare genetic condition Blepharophimosis, Ptosis, Epicanthus Inversus (BPES, also called BPEI). The goal of this organization is to provide a networking system for exchange of information, ideas and concerns with regard to experiences related to BPES. The Web site presents information in English and Italian.

Keywords: Craniofacial abnormalities, Support groups

Annotation: The Children's Craniofacial Association (CCA) provides financial and emotional support for craniofacial patients and their families. CCA also publishes syndrome booklets and a quarterly newsletter and sponsors an annual retreat and symposiums.

Keywords: Craniofacial abnormalities

Annotation: The Coffin-Lowry Syndrome Foundation was founded in 1991 to serve as a clearinghouse for information on CLS and as a general forum for exchanging experience, advice and information with other CLS families. The Foundation seeks to become a visible group in the medical, scientific, education and professional communities in order to facilitate referrals to newly diagnosed individuals, and to encourage medical and behavioral research to improve methods of social integration of CLS individuals. The Foundation maintains an international mailing list of CLS families and publishes a newsletter which is posted on the Web site.

Keywords: Coffin-Lowry syndrome, Coffin syndrome, Coffin-Siris-Wegienka syndrome, Craniofacial abnormalities, Informationdissemination, Parent support services

Annotation: The Craniofacial Foundation of America (CFA) is a non-profit organization that provides financial assistance for non-medical expenses to patients traveling to the Tennessee Craniofacial Center for evaluation and treatment. Services include referrals, reference information, educational materials, and opportunities to network with other patients and families. Publications include a newsletter and journal.

Keywords: Craniofacial abnormalities

Annotation: Craniosynostosis And Positional Plagiocephaly Support, Inc. (CAPPS) is a national non-profit organization that offers information and support to families who have a child with either positional plagiocephaly or craniosynostosis. The organization's primary goal is to raise awareness through education.  (Although these two conditions are very different in cause, in many cases they have a similar outward appearance, which causes many mis-diagnoses.)  CAPPS sponsors fundraising and public awareness events; provides resources and services fo families; hosts an electronic support board; and posts fact sheets and how-to guidance. The organization also maintains state-specific contact lists.

Keywords: Children with special health care needs, CSHN programs, Craniofacial abnormalities, Family support

Annotation: FACES: The National Craniofacial Association is a nonprofit organization serving children and adults throughout the United States with severe craniofacial deformities resulting from birth defects, injuries, or disease. FACES addresses three areas: client travel, public awareness, and information and support. FACES provides financial assistance for expenses incurred while traveling to a craniofacial center for reconstructive surgery, which is based on financial and medical need and includes transportation, lodging, and food. FACES also strives to educate the public by publishing a quarterly newsletter and maintaining a national speaker bureau of clients and families who speak to groups about the challenges of those with craniofacial differences. FACES furnishes information about craniofacial centers, specific diseases or birth defects, and assists in getting families in touch with others who have the same disorder.

Keywords: Craniofacial abnormalities, Information services, Financial support, Support groups, Plastic surgery

Annotation: Forward Face publishes a newsletter and sponsors conferences and training seminars. Offfers publications to consumers; maintains a Web site.

Keywords: Craniofacial abnormalities

Annotation: Let's Face It (LFI) provides information about facial differences including specific conditions, treatment and recovery, and lifestyle for health care providers and consumers.

Keywords: Cleft lip, Cleft palate, Craniofacial abnormalities, Facial disfigurement, Support groups

Annotation: The Mission of the National Foundation for Facial Reconstruction is to enable people, primarily children, with craniofacial conditions to lead productive, fulfilling lives. The NFFR provides assistance through its support of the Institute of Reconstructive Plastic Surgery located at the New York University Medical Center. The broad range of programs includes: comprehensive surgical rehabilitation; medical research and professionals training; assistance in meeting social, psychological and financial needs; and programs to change attitudes towards individuals with a craniofacial condition. The Foundation publishes a newsletter.

Keywords: Craniofacial abnormalities, Facial reconstruction, Medical education, Medical research, Patient care, Plastic surgery, Support groups

Annotation: The National Institute of Dental and Craniofacial Research (NIDCR) seeks to improve oral, dental, and craniofacial health through research, research training, and the dissemination of health information. The oral health section of NIDCR’s website provides information sorted by diseases and conditions, prevention, children’s oral health, oral complications of systemic diseases, and special health care needs. NIDCR’s National Oral Health Information Clearinghouse (NOHIC) also provides information and materials on topics relating to special care in oral health. NOHIC produces and distributes consumer- and professional-education materials and maintains information on organizations involved with special care.

Keywords: Craniofacial abnormalities, Federal government, Oral health, Spanish language materials

Annotation: The National Oral Health Information Clearinghouse (NOHIC), a service of the National Institute of Dental and Craniofacial Research, responds to inquiries from health professionals and the public, produces and distributes education materials, and provides information on oral health topics. Publications, some in Spanish, can be viewed and ordered online.

Keywords: Craniofacial abnormalities, Federal government, Oral health, Spanish language materials, Special health care needs

Annotation: The Sotos Syndrome Support Association (SSSA) is a voluntary not-for-profit organization dedicated to providing information and support to individuals affected by Sotos Syndrome, their families, and health care professionals. The purpose of the association is to establish a social support environment for professionals and families of individuals affected by Sotos Syndrome so they can meet to exchange ideas and help one another cope; to enhance the understanding of Sotos Syndrome through education; to coordinate an annual meeting in which to meet, organize, and discuss association business; and to provide an opportunity for professionals working with individuals affected by the Syndrome to collect data for research and to meet colleagues. The association produces educational materials including brochures, a booklet entitled A Handbook for Families, and a quarterly newsletter for members to network ideas, articles and inspiration.

Keywords: Sotos syndrome, Craniofacial abnormalities, Educational materials, Health education, Macrocephaly, Parent groups, Support groups