Search Results: MCH Organizations

Annotation: The 5p– Society is a parent support organization for families of children with 5p– Syndrome (also known as Cri-du-Chat and Cat Cry Syndrome). The society's mission is to encourage and facilitate communication among families having a child with 5p–Syndrome and to spread the awareness and education of the syndrome to these families and their service providers. The society works with leading genetics and medical researchers to further research efforts, and holds an annual national meeting. Publications are available to consumers. Publications include the 5p– Newsletter.

Keywords: Cri du chat syndrome, Family support services, Information services, Parent groups, Support groups, Medical research

Annotation: The Alexander Graham Bell Association for the Deaf and Hard of Hearing is a membership-based information center on hearing loss, emphasizing the use of technology, speech, speechreading, residual hearing, and written and spoken language. AG Bell focuses specifically on children with hearing loss, providing ongoing support and advocacy for parents, professionals and other interested parties. AG Bell publishes books and brochures on the subject of hearing loss, auditory approaches in education, advocacy, employment, and advances in hearing technology. AG Bell also publishes a magazine, Volta Voices, and a scholarly journal, The Volta Review, and offers resource-referral services to individuals with questions about hearing loss and auditory approaches. AG Bell provides financial aid to qualifying applicants for mainstreamed, auditory-based education at the preschool, school-age, and university levels. Regional conferences and biennial conventions are held to educate both members and non-members on issues relating to hearing loss. AG Bell also provides governmental and education advocacy services through its state chapters, children's rights coordinators, and international affiliates.

Keywords: Deafness, Family support services, Hearing disorders, Lip reading training, Professional training

Annotation: The American Society for Deaf Children (ASDC) provides information and support to parents and families of deaf or hearing-impaired children. The society offers assistance with educational or legal problems related to rearing a hearing-impaired child. Services are also provided to the public. Publications include a journal and a quarterly newsletter, The Endeavor. Some materials are available in Spanish, and the ASDC sponsors a biennial convention, a "First Year Free" program, and a listserv.

Keywords: Civil rights, Deafness, Disabilities, Family support services, Hearing disorders, Information services, Parent groups

Annotation: ARCH National Respite Network and Resource Center assists and promotes the development of quality respite and crisis care programs in the United States. The ARCH National Respite Network includes the National Respite Locator, a service to help caregivers and professionals locate respite services in their community; the National Respite Coalition, a service that advocates for preserving and promoting respite in policy and programs at the national, state, and local levels; and the Respite Technical Assistance Center, which is funded by the U.S. Administration on Aging. ARCH National Respite Network and Resource Center is a project of the Chapel Hill Training-Outreach Project.

Keywords: Advocacy, Coalitions, Crisis intervention, Family support services, Information networks, Life course, Resource centers, Respite care, Special health care needs, Technical assistance

Annotation: The Association for Children with Down Syndrome (ACDS) Strives to provide an environment that helps infants, toddlers, and preschool children with Down syndrome to participate in mainstream school and community activities through its early intervention and pre-school service. In addition to conducting research, ACDS provides resources, referrals, and programs for children 5-21 with Down syndrome and helps educate the community through workshops, conferences, and publications (including the bimonthly ACDS Newsletter). A catalog of publications and audiovisual materials is available, and materials are provided in Spanish. ACDS also provides residential services to young adults with Down Syndrome and other developmental disabilities.

Keywords: Chromosome abnormalities, Down syndrome, Family support services, Geneticdisorders, Information services, Medical research, Mental retardation, Public awareness materials

Annotation: Birth Defect Research for Children (BDRC), formerly the Association of Birth Defect Children (ABDC), disseminates information on birth defects, especially those that may be caused by environmental substances such as drugs, pesticides and other chemicals, and radiation. It also provides referrals and helps people with birth defects to cope with problems associated with physical malformation. The 501 (c) (3) organization sponsors a national parent matching program that links families of children with similar birth defects, and in 1993 it established a National Birth Defect Registry that collects information on birth defects, learning disabilities, cancers, and other childhood disabilities that may be related to environmental exposure of either parent during or before pregnancy. Publications include fact sheets on the most common categories of birth defects as well as environmental toxins that have been linked to birth defects.  A free monthly newsletter is sent out electronically.  Parents may subscribe on the BDRC web site.

Keywords: Congenital abnormalities, Environmental exposures, Family support services, Information services

Annotation: BUILD is a national initiative that helps state leaders prepare young children aged birth to five to succeed by helping their families access high quality early learning; family and parenting support; early intervention for children with special needs; and comprehensive health mental health and nutritional services. BUILD assists states in planning and implementing a comprehensive early childhood “system of systems” that crosses policy domains and helps ensure that families get the services they need. It was created in 2002 by the Early Childhood Funders Collaborative (ECFC), a consortium of private foundations.

Keywords: Child mental health, Early intervention, Families, Family support services, Infants, Young children, Special health care needs

Annotation: Cancer Care is a nonprofit organization that helps people with cancer and their families to cope with the disease. The organization provides psychological, social, and educational services and financial assistance for people in New York, New Jersey, and Connecticut. Individual counseling, information, and referrals and group counseling and education programs are offered nationally through the Cancer Care Counseling Line (1 800 813-HOPE). Services are also offered online. Cancer Care also provides publications, including a newsletter, and sponsors conferences, training seminars, and workshops. Some materials are available in Spanish. All services are free of charge.

Keywords: Cancer, Family support services, Support groups, Financial support, New York, New jersey, Connecticut

Annotation: The Candlelighters Childhood Cancer Foundation (CCCF) is an international network of parents of children with cancer, survivors of childhood cancer, and interested professionals. The foundation identifies patient and family needs so that medical and social systems can respond adequately, eases frustrations and fears through sharing of feelings and experiences, provides guidance in coping with the effects of the disease on the child and family, and exchanges information on research, treatment, medical institutions, and community resources. Other activities include an ombudsman program for help with legal issues related to employment, insurance, or second opinions. CCCF also sponsors conferences and workshops and maintains a listserv. Publications include books and a resource catalog. Publications for families include Know Before You Go; Educating the Child with Cancer; You are Not Alone; and a quarterly newsletter called Candlelighter's Quarterly.

Keywords: Cancer, Children, Family support services, Information services, Parent groups

Annotation: The Child Welfare Information Gateway provides information services to child welfare and related professionals and the public as the clearinghouse for the Children’s Bureau, compiling, synthesizing, and disseminating resources to promote the safety, permanency, and well-being of children and families. The Information Gateway provides access to publications, websites, and online databases covering a range of topics, including child welfare, child abuse and neglect, foster care, adoption, and the content areas for which the Children's Bureau Training and Technical Assistance Network (TTA) members provide support.

Keywords: Adopted children, Adoptive parents, Biological parents, Child abuse, Child neglect, Children with special health care needs, Clearinghouses, Databases, Family violence, Information services, Information dissemination, Adoption, Injury prevention, Spanish language materials, Support groups

Annotation: Children and Family Futures (CFF) provide specialized knowledge on improving collaborative practice and policy among the substance abuse, child welfare, Tribal child welfare and family judicial systems to improve the lives of children and families, particularly those affected by substance use disorders. CFF advises Federal, State, and local government and community-based agencies, conducts research on the best ways to prevent and address the problem, and provides comprehensive and innovative solutions to policy makers and practitioners.

Keywords: California, Child advocacy, Child welfare, Children, Family support services, Substance abuse, Substance use disorders

Annotation: The Chromosome 9p- Network, previously known as Support Group for Monosomy 9p, links families of children with monosomy 9p, provides nonclinical information annually on the development of children with monosomy 9p, and promotes research on the ninth chromosome. Other names for this syndrome include ring 9, mosaic 9p, 9pminus, 9p-, and Alfis Syndrome.

Keywords: Chromosome abnormalities, Family support services, Genetic disorders, Monosomy 9p, Parent groups

Annotation: The Connor Kirby Infant Memorial Foundation provides financial assistance for funeral and cemetery expenses and for therapy sessions to families suffering from the loss of an infant.

Keywords: Infant death, Bereavement, Child death, Family support services, Fetal death, Financial support, Grief, Infant mortality

Annotation: The Council on Accreditation (COA) in an international, independent, not-for-profit child- and family-service accrediting body. It assists organizations seeking accreditation and provides training workshops. It promotes best-practice standards; champions quality services for children, youth, and families; and advocates for the value of accreditation. It publishes standards for the full array of child and family services, financial management and debt counseling services, behavioral healthcare services, employee assistance programs, and other service areas. It also publishes an annual report.

Keywords: Accreditation, Child health services, Family support services, Standards

Annotation: Educational Opportunities for Children & Families (EOCF) has been serving the southwest community of Washington state since 1967, when it was formed as a Community Action Agency to fight the War on Poverty. EOCF provides services to more than 2,000 low-income children and families in four southwest Washington counties through programs as Head Start, Early Head Start and Early Childhood Education and Assistance Program (ECEAP). EOCF offers a wide range of critical services to low-income children and families, including early childhood education; comprehensive health, mental health, nutrition, and disabilities; physical and developmental assessments; and support to families through case management, training and parent education. Translators are available for Russian, Spanish, and Vietnamese.

Keywords: Community health services, Child health services, Early childhood development, Family support services, Head Start, Low income groups, Screening, Washington

Annotation: The Ehlers-Danlos National Foundation (EDNF) provides emotional support, education, and understanding for people with Ehlers-Danlos syndrome and their families. The foundation sponsors learning conferences and serves as an informational link to the medical community. Publications include a quarterly newsletter, Loose Connections. The foundation has local branches through out the United States.

Keywords: Connective tissue diseases, Ehlers Danlos syndrome, Family support services, Information services, Parent groups

Annotation: Families of Children Under Stress (FOCUS) offers emotional, informational, and physical support to families with children with disabilities or ongoing medical needs through a variety of programs. Programs include support groups, newsletters, community-based respite programs, summer day camps, and family activities.

Keywords: Family support services, Parent groups, Stress management

Annotation: The Family Resource Center on Disabilities provides information, training, and assistance to parents of children with disabilities information.

Keywords: Advocacy, Children with special health care needs, Disabilities, Family support, Health services, Illinois, Special education

Annotation: The mission of the Family Support Network of North Carolina (FSN-NC) is to enhance the lives of North Carolina's children who have special needs or are at risk by providing support and information to families, by promoting family support, and by encouraging collaboration among families and service providers in the design and delivery of services. The Central Directory of Resources (CDR) provides printed information about disabilities and disability-related issues, and referrals to service agencies, support groups and advocacy organizations at the local, state and national level. Printed information is available to callers in North Carolina, and some materials are available in Spanish. Local Family Support Network programs provide a variety of community-based services, including peer support, workshops, NICU programs, sibling activities, and outreach to foster families with children with special needs throughout North Carolina. Family Support Network of North Carolina publishes a summer camp directory for children with special health needs in North Carolina.

Keywords: Family resource centers, Family support services, Medically fragile children, North Carolina, Stress management

Annotation: The Federation for Children with Special Needs (FCSN) is a nonprofit organization that provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities.

Keywords: Parent professional relations, Advocacy, Agent Orange, Children with special health care needs, Family support, Information services, Parent education, Young children