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 Alliance for Transforming the Lives of Children (TLC) promotes optimal human development from preconception through early childhood, offering guidance about consciously conceiving, birthing, and nurturing children. The Alliance synthesyzes age-old wisdom and leading scientific research in its efforts to champion a compassionate culture, capable of enjoying, learning from, and responsively and lovingly interacting with children. TLC hosts an online discussion group, produces an electronic newsletter, and provides parent mentoring and educational services through its WarmLine family support program. The alliance also posts annoted reading lists and publications produced by affiliate organizations.

Keywords: , Mentors, Human development, Child care, Community participation, Family support programs, Infant care, Parent education, Parenting, Preconception care, Prenatal care

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 California Sudden Infant Death Syndrome (SIDS) Program is dedicated to Sudden Infant Death support, awareness, and risk reduction. Information is provided on grief and bereavement, SIDS facts, and infant care practices for reducing the risk of SIDS. Information is available for SIDS professionals, SIDS Coordinators, and families. Numerous materials are available in Spanish, and occasionally in Chinese, Japanese, Korean, Tagalog, and VIetnamese. The program is under the direction of the California Department of Public Health, Maternal, Child and Adolescent Health Division.

Keywords: Advocacy, California, Consumer education materials, Family support, Infant death, Infant mortality, Parent support, SIDS, Spanish language materials

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: CHADD (Children and Adults with Attention-Deficit /Hyperactivity Disorders) is a national nonprofit organization serving individuals with attention deficit / hyperactivity disorder. Through collaboration leadership, advocacy,research, education, and support, CHADD provides science-based information about AD/HD to parents, educators, professionals, the media, and the general public. CHADD houses and administers the CDC'funded National Resource Center on AD/HD, a nation-wide clearinghouse for information, support, and referrals. CHADD has more than 20,000 members in over 200 local chapters. CHADD sponsors an annual conference and publishes a bi-monthly magazine, Attention!, a quarterly newsletter, Inside CHADD, and an electronic newsletter News from CHADD.

Keywords: Attention deficit disorder, Hyperactivity, Information dissemination, Learning disabilities, Parent groups, Support 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: 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: Cribs for Kids was established in 1998 under the guidance of SIDS of Pennsylvania, whose staff realized that most sudden unexpected infant deaths were among low-income families, and most of the infants who died were found on couches, chairs, or adult beds. Cribs for Kids partnered with portable crib manufacturer GRACO Pack N Play.® Currently, Cribs for Kids has more than 350 Partner Programs that provide safe sleep educational materials and portable cribs to families who cannot afford a safe place for their babies to sleep.

Keywords: State organizations, Advocacy, Consumer education, Family support, Infant death, Infant mortality, Parent support, Pennsylvania, SIDS

Annotation: The Cystinosis Foundation serves as a support group for parents of children with cystinosis, educates the general public and the medical community, and raises funds for research. Publications include a pamphlet, Facts About Cystinosis, and a quarterly newsletter.

Keywords: Cystinosis, Children, Fundraising, Metabolic diseases, Parent groups, Support groups

Annotation: The Cystinosis Research Network is a volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis. The network offers news, information about cystinosis and about research, links to additional resources, and two e-mail discussions lists, one for parents and one for adolescents, and an e-mail newsletter.

Keywords: Children, Cystinosis, Fundraising, Metabolic diseases, Parent groups, Support groups

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: The Every Child Succeeds (ECS) program offers Greater Cincinnati first-time mothers and their families support to ensure an optimal start for their children. ECS is a collaborative evidence-based home visitation program that includes 14 provider agencies whose social workers, child development specialists and nurses provide services for first-time, at-risk mothers on a regular basis from the time of pregnancy until the child's third birthday.

Keywords: Community programs, Home visiting, Infants, Ohio, Parent education programs, Parent support programs, Young children

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