Search Results: MCH Organizations

Annotation: 4p– (or Wolf Hirschhorn Syndrome) Support Group was founded in 1985 to help families affected by chromosome 4p deletion. Information is sent only to parents of affected children. Publications include a newsletter. The group sponsors biannual conferences and biannual regional gatherings.

Keywords: Chromosomal deletion, Chromosome 4, Parent groups

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: Aicardi Syndrome Newsletter is an international nonprofit organization that gathers/shares information and provides support for families of children with Aicardi syndrome. Services to consumers include publications and reference information. The ASN publishes two to three newsletters per year, maintains an online listserv, and sponsors a conference for member families every other year. The organization collaborates with and is active in ongoing research.

Keywords: Aicardi syndrome, Parent groups

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 Behcet's Disease Association provides information and peer support for people with Behcet's disease. The association offers a quarterly newsletter, information on audiotape, telephone support, local support group information, and national patient conferences. Some materials are available in Spanish.

Keywords: Behcet's Syndrome, Connective tissue diseases, Parent groups, Reiter's Syndrome, Stevens-Johnson Syndrome

Annotation: The American Hyperlexia Association (AHA) is a nonprofit organization of speech and education professionals, parents, and concerned individuals that works to identify hyperlexia, which is a syndrome observed in children that exhibit the following characteristics: precocious ability to read words far above what would be expected at their chronological age or an intense fascination with numbers or letters; significant difficulty understanding verbal language; and abnormal social skills. The Association also promotes and facilitates effectual teaching techniques at home and in school, and to educate the public on the existence of this syndrome. Publications include a newsletter. AHA sponsors conferences.

Keywords: Communication disorders, Hyperlexia, Parent groups

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 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 Brookings Institution's Center on Children and Families focuses on the well-being of America's children and their parents, especially those in less advantaged families. The center's research and activities are designed primarily to improve understanding of the reasons for poverty or low income, especially among working families, and the potential of various policies to improve their prospects and the life chances of their children. The center includes a partnership with Princeton University and joint publication of the journal The Future of Children.

Keywords: Children, Families, Low income groups, Policy analysis, Poverty, Public policy, Research, Working parents

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: 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: Chromosome Deletion Outreach, Inc. is a non-profit organization that provides support and information to families affected by rare chromosome disorders. These disorders include deletions, duplications, translocations, rings and inversions. CDO provides family matching, a quarterly newsletter, listservs and articles on rare disorders if available. Some materials are available in Spanish and French.

Keywords: Chromosomal deletion, Chromosome abnormalities, Listservs, Parent groups

Annotation: The Cornelia de Lange Syndrome (CdLS) Foundation is a family support organization which works to ensure early and accurate diagnosis of CdLS; promote research into the causes and manifestations of the syndrome; and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime. Services to consumers include referrals, publications, and reference information. Publications include Facing the Challenge: A Parents' Guide to CdLS, Facts About Cornelia de Lange Syndrome, CdLS Foundation Album, and a bimonthly newsletter, Reaching Out. Some materials are available in Spanish. The foundation sponsors a conference every other year.

Keywords: De Langes syndrome, Developmental disabilities, Parent groups

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: Children, Cystinosis, 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: 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