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: A Heartbreaking Choice provides resources and support for expectant parents who have received a diagnosis that their unborn child has a serious fetal anomaly or other live-threatening health problem that makes it unlikely that the baby will survive and thrive. For those who have made the decision to end their pregnancy when faced with such a grim diagnosis, this organization provides support groups, an online discussion forum, a confidential list service, an online memorial for grieving parents, personal stories, and feature articles to help these parents cope with their loss.

Keywords: Congenital abnormalities, Fetal death, Grief, Perinatal bereavement, Perinatal mortality, Pregnancy loss, Support groups

Annotation: The Acoustic Neuroma Association (ANA) is a national, patient-founded support and information organization for people who have experienced acoustic neuroma or other benign tumor affecting the cranial nerves. The association promotes and supports education and research. Publications for consumers include a booklet, Acoustic Neuroma; a brochure, Acoustic Neuroma? Inside—Some Answers; and a quarterly newsletter, Notes. ANA also sponsors a biennial national conference.

Keywords: Acoustic neuroma, Nervous system diseases, Support groups, Tumors

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: Al-Anon Family Groups (Al-Anon/Alateen) is a self-help fellowship that offers a program of recovery for the relatives and friends of alcoholics. Members share their experience, strength, and hope in order to solve their common problems. Al-Anon is not allied with any sect, denomination, political entity, organization, or institution. On behalf of the group it serves, the organization registers local meetings, sponsors training seminars, and develops education books, audiovisuals, booklets, and brochures about recovery from the effects of living with the disease of alcoholism. Some of these materials are available in Spanish and French. They also publish a newsletter and catalog.

Keywords: Alcohol abuse, Alcoholism, Educational materials, Family recovery, Substance abuse, Support groups

Annotation: The Alagille Syndrome Alliance is a support network for individuals and families with this liver disorder. The alliance publishes a newsletter, Liver Link, and other informational materials. It also provides networking (the Alliance hosts a chat room and electronic bulletin board); parent matching services; and consultation through a medical advisory board. The Alliance also sponsors conferences.

Keywords: Chronic illnesses and disabilities, Liver diseases, Support groups

Annotation: Alstrom Syndrome International (ASI) provides information, networking, and emotional support for people afflicted with Alstrom Syndrome and their families. It also serves as an information resource for physicians, researchers, and any associated professionals who have an interest in Alstrom syndrome. ASI also promotes and encourages medical research with the hope of determining the cause and finding a cure for Alstrom Syndrome and related diseases. ASI publishes a quarterly newsletter and maintains a listserv for individuals (both professionals and family members) interested in Alstrom Syndrome. Materials are available in Portuguese, German, Italian, Spanish, Swedish, Dutch, Turikish and Japanese.

Keywords: Alstrom syndrome, Medical research, Support groups

Annotation: Peers for Progress is a program of the American Academy of Family Physicians Foundation and supported by the Eli Lilly and Company Foundation. The program was founded in 2006 to promote peer support as a key part of health, health care, and prevention around the world. Activities include promoting peer support programs, developing a global network of peer support programs, and hosting a global web page to circulate program materials and curricula.

Keywords: Information networks, International programs, Networking, Peer counseling, Peer education, Peer groups, Peer support programs

Annotation: The American Celiac Society/Dietary Support Coalition (ACS/DSC) provides educational and informational materials on lactose-free, gluten-free diets to patients, physicians, nutritionists, and others. The society responds to information requests, provides referrals to support groups, publishes a newsletter, hosts a list serve, sponsors educational conferences and meetings on celiac desease(Sprue, Non-Tropical Sprue, Tropical Sprue), Dermatitis Herpetiformis, Crohn's Disease, Lactose Intolerance, Wheat Intolerance, and various autoimmune diseases, and supports research on celiac sprue disease and other dietary disorders. Membership is open to all individuals with dietary problems, family and friends of these individuals, medical professionals, and anyone interested in learning more about these dietary problems and promoting the ideals of our organization. Materials are available in Spanish and Italian.

Keywords: Celiac disease, Diet therapy, Gluten intolerance, Lactose intolerance, Restricted diets, Support groups

Annotation: The American Fertility Association (AFA) works to serve the needs of men and women confronting infertility issues; to support families during struggles with infertility and adoption; to educate the public about reproductive disease; and to raise awareness and fight for social and legislative change around infertility issues. The AFA provides a range of services designed to help people gather information about medical treatments, options, coping techniques, legal and insurance issues, and other concerns. One of its goals is to help couples make informed decisions throughout the infertility process. The AFA's services focus around increasing awareness of the medical and social issues around reproductive health and infertility, as well as prevention efforts that target young people to help them make informed choices about their sexual and reproductive lives.

Keywords: Adoption, Fertility, Infertility, Information services, Pregnancy, Public awareness campaigns, Referrals, Reproduction, Reproductive health, Reproductive technologies, Support groups

Annotation: The American Network of Community Options and Resources (ANCOR) represents and assists private agencies that provide support and services to people with mental retardation and/or other disabilities. The network helps these agencies to appropriately meet the needs of the people they serve and to improve their quality of life. Services to families and people with disabilities include referrals, publications, and reference information. ANCOR publishes a newsletter and sponsors conferences and training seminars.

Keywords: Disabilities, Information services, Mental retardation, Support groups

Annotation: The American Occupational Therapy Association (AOTA) meets the needs of people whose lives have been disrupted by injury or illness, developmental problems, the aging process, or social or psychological difficulties by promoting their involvement in therapeutic tasks to improve function, performance capacity, and the ability to cope with the demands of daily life. Members include occupational therapists, occupational therapy assistants, and occupational therapy students. The association conducts research, compiles statistics, publishes the American Journal of Occupational Therapy, and produces catalogs, books, monographs, and a semimonthly magazine, OT Practice. The association also sponsors conferences and training seminars, and workshops. Some materials are available in Spanish.

Keywords: Occupational therapy, Support groups, Professional societies

Annotation: The American Parkinson Disease Association (APDA) funds medical research, organizes support group chapters, and provides information and referral services to patients, their families, and the public. Publications include Be Active, Good Nutrition and Coping with Parkinson Disease, Parkinson's Disease Handbook (in English and Spanish), Speaking Effectively, and a quarterly newsletter. The association also provides materials in Spanish, Italian, Chinese and Japanese languages. The association sponsors conferences. The association's West Coast office is located at 10850 Wilshire Boulevard, Suite 730, Los Angeles, CVA 90024, (800) 908-2732.

Keywords: Medical research, Support groups, Information services, Nervous system diseases, Parkinson disease

Annotation: The American Sleep Apnea Association (ASAA) was founded in 1990 as a non-profit organization by persons with apnea and concerned health care providers and researchers. The mission of ASAA is to reduce injury, disability, and death from sleep apnea and to enhance the well-being of those affected by this common disorder. The ASAA promotes education and awareness, the A.W.A.K.E. (Alert, Well, And Keeping Energetic) Network of voluntary mutual support groups, research, and continuous improvement of care. Referrals are available upon request, and ASAA publishes a newsletter.

Keywords: Apnea, Education, Sleep disorders, Support 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 American Syringomyelia Alliance Project (ASAP) is a support and family networking group that provides reference information, medical articles, videotaped lectures, and a bimonthly newsletter on syringomyelia and the chiari malformations. ASAP also sponsors workshops, and a list service and holds an annual conference.

Keywords: Arnold Chiari deformity, Hydromyelia, Information services, Listservs, Post traumatic syringomyelia, Support groups, Syringobulbia, Syringomyelia

Annotation: One of the Annie E. Casey Foundation's main objectives is to provide the best available data and analysis on critical issues affecting disadvantaged children and families, as well as the knowledge and tools that practitioners, policymakers, and citizens need to advance their efforts on behalf of children. For more than half a century the foundation has worked to improve the futures for kids at risk of poor outcomes. Their mission encompasses direct support services to vulnerable children and families, and in recent years has used major grant making to support demonstrations, evaluations, and advocacy aimed at helping large public systems, as well as nonprofit networks, to become more effective in their efforts on behalf of struggling families and at-risk kids.

Keywords: Child health, Data, Data analysis, Family support, Grants, High risk children, Low income groups, Poverty

Annotation: Established in 1982, Any Baby Can (ABC) is a networking effort to link all services for high-risk babies and children with developmental delays in San Antonio and Austin, Texas, and in the surrounding region. The organization also provides support services for families in crisis situations and sponsors A Vision for Children Center advocacy and networking coalition as well as training seminars. Any Baby Can has been nationally recognized for innovative efforts that include the ABC Baby Helpline, Crisis Fund for Infants, and intergenerational Family Friends. Any Baby Can created the Texas Respite Resource Network, Children's Transplant Association of Texas, the Sudden Infant Death Syndrome Support Group of San Antonio, and the Tiny Trax program for very low birth weight babies. Publications include a quarterly newsletter, brochures, and a childhood development checklist. Some materials are available in Spanish.

Keywords: Advocacy, Early intervention, Family support, High risk infants, Infant stimulation, Support groups, Texas

Annotation: The Arc of the United States, formerly the Association for Retarded Citizens of the United States, works to prevent and ameliorate mental retardation and to improve the quality of life for children and adults with mental retardation and their families. The Arc's state and local chapters provide services or advocate for services for people with mental retardation throughout the United States. The association provides information, publications, and referrals to parents, organizations, and communities to assist them in meeting the needs of people with mental retardation.

Keywords: Mental retardation, Support groups, Information dissemination

Annotation: The Batten Disease Support and Research Association (BDSRA) sponsors research on Batten disease and provides support, referrals, and information to families affected by the disease. Publications include Batten Disease: Neuronal Ceroid Lipofuscinoses and a newsletter. Some materials are available in Spanish, French and other languages. BDSRA also sponsors conferences, training seminars, and workshops.

Keywords: Batten disease, Brain diseases, Medical research, Support groups, Nervous system diseases, Neuronal ceroid lipofuscinoses