ACPA Family Services

Links A-G

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Support Organization Links Focusing on Cleft Lip, Cleft Palate, and Other Craniofacial Conditions: Letters A-G

A – B – C – E – F – G

Links:A

International organization providing emotional support and information to people with facial differences and their families.

A nutrition & feeding resource for adoptive & foster families of a child with cleft lip/palate

The mission of AmeriFace is to provide information and emotional support to individuals with facial differences and their families and increase public understanding through awareness programs and education. 

An online support and information source for individuals and families affected by Apert Syndrome.

Links:B

Support group for people with Basal Cell Carcinoma Nevus Syndrome. Cleft lip and palate is one of the manifestations of this syndrome.

Organization providing information to parents and professionals about all kinds of birth defects, resources, support groups, and environmental exposures.

An organization that makes blankets and gives them away to children in need of comfort, including those who are ill, abused or experiencing trauma of any kind. Donna Serra, Binky Patrol Chapter, Maryland, dmserra2@juno.com

Links:C

Provides captioned media and other assistance for deaf and hard of hearing people.

A national nonprofit organization, headquartered in Dallas, TX which addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. CCA’s mission is to empower and give hope to facially disfigured children and their families.

Provides parents of kids with cleft lip/palate a one-stop overview of many options related to cleft care, based on the personal experience of hundreds of other families of cleft-affected children. 

Provides advice for people who are fighting insurance denials for their medical care.

Organization providing support and assistance to individuals and families in the UK.

Comprehensive information for new parents, especially those seeking treatment in the Republic of Ireland.

Support group for families affected by cleft lip and palate.

Provides information about team care in California, as well as details about legislation and insurance advocacy in that state.

Online support group for parents of children with craniosynostosis and positional plagiocephaly.

Online group for individuals and families affected by Crouzon Syndrome and other craniofacial anomalies.

Links:E

Cleft lip/palate resource binder compiled by Eastern Health in St. John’s, Newfoundland, Canada. This resource is also available in French.

Website and magazine about parenting a child or young adult with a disability or special health care need.

Links:F

Organization that empowers and connects people affected by cleft lip and/or cleft palate in the state of Colorado. They work with youth born with clefts, their families, friends and care providers to ensure they have the resources to thrive and be agents of social change in their communities.

National, nonprofit, non-partisan organization dedicated to achieving high-quality, affordable health care for all Americans. Find out about current legislation affecting you!

National coalition of families and professionals advocating for children with special needs. See their network of state coordinators and publications on insurance advocacy.

Provides information about team care in Florida, as well as referrals for parent support resources.

A New England-based, not for profit, volunteer based organization that provides clear, accurate information, as well as other educational resources to children born with craniofacial conditions and their families.

A network and clearinghouse of resources for individuals with facial differences, their parents, families, and friends.

Links:G

National coalition of consumers, professionals, and genetic support groups founded to voice the common concerns of people with genetic conditions.