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: Aiding Mothers and Fathers Experiencing Neonatal Death (AMEND) offers support and encouragement to parents who have lost an infant. Bereaved parents have one-to-one contact with a trained counselor who has also experienced a loss due to miscarriage, stillbirth, or neonatal death. Several local chapters exist without formal national affiliation. St. Louis AMEND was established in 1974. Los Angeles AMEND was established in 1977 and can be reached at P.O. Box 30, Harbor City, CA 90710-0030; (818) 887-7999. Services to consumers include publications and reference information. Some materials are available in Spanish.

Keywords: Grief, Neonatal death, Perinatal bereavement, Perinatal mortality, Pregnancy loss, Spontaneous abortion, Support groups, Parent support services

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: The Association for Glycogen Storage Disease (AGSD) protects and promotes the interests of people affected by glycogen storage disease, disseminates information, provides parental support and referral services, sponsors an annual conference, and facilitates communication among professionals in related fields. Publications include a quarterly newsletter, The Ray, and a parent handbook.

Keywords: Glycogen storage disease, Health promotion, Information dissemination, Information services, Metabolic diseases, Parent support services

Annotation: The Beckwith-Wiedemann Support Network (BWSN) is a national nonprofit organization for parents of children with Beckwith-Wiedemann syndrome (BWS) and concerned professionals. It provides information and peer support to people and families affected by BWS, works to increase public and professional awareness of BWS, and encourages research into the cause, early (including prenatal) detection, and treatment of BWS. Publications include a parent directory for family members, a newsletter produced three times a year, and a brochure, What is Beckwith-Wiedemann Syndrome? The network is a member of the International Beckwith-Wiedemann Association. BWSN also does cross references to Simpson-Golabi-Behemel Syndrome. SGBS has similar characteristics and parents with children diagnosed with SGBS can be members here and receive information.

Keywords: Beckwith-Wiedemann syndrome, Early intervention, Information services, Parent groups, Peer support Programs, Simpson-Golabi-Behemel syndrome, Support groups

Annotation: Beginnings for Parents of Children who are Deaf or Hard of Hearing serves families of children who are deaf or hard of hearing (0–21 years old) and concerned professionals. The organization provides parent support and information about hearing loss, including communication and educational options. Publications include videotapes, a parent manual, and brochures. Some materials are available in Spanish.

Keywords: Children, Deafness, Hearing disorders, Parent groups, Parent support services, Testing

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 Center for the Improvement of Child Caring (CICC), a nonprofit organization founded in 1974, works to give parents the education and support they need, and to give the professionals who work with parents and children the latest continuing education to enable them to provide high quality parenting and child development services. CICC creates, evaluates, delivers and disseminates a variety of parenting skill-building programs that are taught in communities in the form of parenting classes, seminars and workshops. The Center delivers classes and seminars in these programs in Los Angeles and other cities throughout the United States, and it does this in cooperation with schools, childcare centers, Head Start agencies, hospitals, and civic, cultural religious and other local institutions. CICC offers a variety of books, videos, and other materials on parenting and child development issues and has an online methodology for parents and service providers to help determine whether children under five may have special needs (The CICC Discovery Tool).

Keywords: Child health, Parent education programs, Parent support services, Parenting

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: 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 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 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: Family Network on Disabilities (FDN) is a national network of individuals of all ages who may be at-risk, have disabilities, or have special needs, together with their families, professionals, and concerned citizens. Their mission is to provide family-driven support, education, information, and advocacy. FDN provides online learning tools (including archived webinars), a digital library, and resources at the national library and Florida state level.

Keywords: , Special education, Advocacy, Children with special health care needs, Disabilities, Education, Florida, Information services, Parent education, Parenting, Support groups

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

Annotation: The Foster Care and Adoption Resource Center (FCARC) provides information and resources for Wisconsin's prospective foster and adoptive families; public, tribal, and private agency foster care, child welfare and adoption staff; and youth currently or previously involved with the foster care system. To assist in providing and locating information, the FCARC provides a toll-free information line, e-mail contact, and comprehensive web-based resources.

Keywords: State agencies, Adoption, Child advocacy, Child welfare, Children, Foster care, Foster parents, Parent support services, Resource centers, Wisconsin

Annotation: The Freeman-Sheldon Parent Support Group (FSPSG), now part of the Freeman-Sheldon Rsearch Group, provides emotional support to families affected by Freeman-Sheldon syndrome, also known as whistling face syndrome and cranio-carpal-tarsal dysplasia. Families share their experiences in coping with the syndrome, information about treatments, and pertinent medical literature. The group also supports national and international research on the syndrome.

Keywords: Musculoskeletal diseases, Chronic illnesses and disabilities, Coping, Cranio-carpal-tarsal dysplasia, Facial abnormality, Family support, Information services, Medical research, Parent groups, Support groups, Whistling face syndrome

Annotation: The FRIENDS National Resource Center for Community-Based Child Abuse Prevention (CBCAP) Programs provides training and technical assistance to federally funded CBCAP Programs. The Center assists in building networks, collecting data, promoting stakeholder involvement, and providing access to resources. The Web site provides access to online learning tools, print materials, a listserv, weblinks, and information on upcoming meetings and events. The Center is a participant in the Children's Bureau Training and Technical Assistance Network (TTA).

Keywords: Child abuse, Child neglect, Child welfare, Community programs, Family centered services, Family resource centers, Family support programs, Parent support services, Prevention programs, State programs

Annotation: The International Association for Life Quality (IALQ) was established online in 2009 as an initiative of the Training, Education, and Research Institute (TERI Inc.) to help educate, advocate and propagate programs and services focusing on quality of life issues without being hindered by geographical boundaries. Goals are to offer the world’s first specialization, coursework and accreditation programs focusing on special needs life coaching and more. This online community is a place for scholars, researchers, professionals, families and others interested in improving and assuring life quality for persons with developmental disabilities to become colleagues together in this mission.

Keywords: Children with special health care needs, Developmental disabilities, Family support services, Individualized family service plans, Life skills, Parent education, Special health care services

Annotation: The Klippel-Trenaunay (K-T) Support Group serves people with Klippel-Trenaunay syndrome and their families. The group facilitates correspondence between members, collects and disseminates current medical literature pertaining to K-T, and and provides referrals. A Spanish-language translator is available. The group also publishes a newsletter and sponsors conferences.

Keywords: Cardiovascular diseases, Family support services, Klippel Trenaunay Weber syndrome, Parent groups, Parent support services