Search Results: MCH Organizations

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 Benign Essential Blepharospasm Research Foundation (BEBRF) is an international clearinghouse for information on spasms of the facial musculature (blepharospasm, Meige's syndrome, and hemifacial spasms). The foundation works to eradicate blepharospasm and to support people with the disorder. Activities include sponsorship of continuing education and an annual international conference. The foundation provides referrals, publications, and reference information to consumers. Publications include Benign Essential Blepharospasm, Meige's and Other Related Disorders , a bimonthly newsletter, and a catalog of audiovisual materials. Some materials are available in Spanish. The Foundation also sponsors conferences and workshops.

Keywords: Benign essential blepharospasm, Facial dystonia, Meige syndrome, Neuromuscular diseases, Support groups, Information services,, Vision disorders

Annotation: The Birthing Project USA is a national, community based, African American maternal and child health project that has been replicated in over 70 communities. The project provides training and support to women and organizations who are interested in starting a project in their communities; helps local projects identify and obtain necessary resources; and sponsors an annual training and networking conference. The project pairs male and female mentors (sister friends and brother friends) with expectant parents and parents of children up to one year old. The project also has three e-mail based groups that allow members, staff, participants, and supporters to connect with each other. It also provides a list of model programs.

Keywords: Blacks, Community programs, Mentors, Pregnant adolescents, Support groups

Annotation: The BPES Family Network is an international, non-profit, self-help group established in 1994 to offer encouragement, understanding and information for individuals and families affected by the rare genetic condition Blepharophimosis, Ptosis, Epicanthus Inversus (BPES, also called BPEI). The goal of this organization is to provide a networking system for exchange of information, ideas and concerns with regard to experiences related to BPES. The Web site presents information in English and Italian.

Keywords: Craniofacial abnormalities, Support groups

Annotation: Founded in 1980, the Brain Injury Association of America seeks to create a better future through brain injury prevention, research, education and advocacy. Services to consumers include inquiry responses, information packets, and referrals to local resources. Publications include The National Directory of Brain Injury Rehabilitation Services, various brochures, including the eight-part "Road to Rehabilitation" series. Some materials are available in Spanish. The association also sponsors workshops, conferences, training seminars, and Brain Surgery Awareness Month in March.

Keywords: Advocacy, Brain injuries, Support groups, Education, Injury prevention, Intervention, Long term care, Rehabilitation, Research, Therapeutics, Trauma

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 Celiac Disease Foundation (CDF) is a nonprofit patient education, support, and research organization devoted to increasing awareness and understanding of Celiac Disease/Dermatitis Herprtiformis (CD/DH). In addition to offering services designed to educate, assist, and support affected individuals and their families, CDF works with the health care community to create more awareness of CD. Services to consumers include referrals, publications, and reference information. CDF publishes a newsletter and sponsors conferences and training seminars.

Keywords: Celiac disease, Diet therapy, Gastrointestinal diseases, Gluten intolerance, Information services, Support 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: Founded in 1983, the Charcot-Marie-Tooth Association (CMTA) supports research, provides public education, and works toward the ultimate treatment and cure of Charcot-Marie-Tooth (CMT) disease. The association sponsors regional patient/family support groups throughout the nation, conducts patient/family and medical/professional CMT educational conferences in major metropolitan areas and sponsors research. Services to consumers include referrals, reference information, and publications. Publications include a bi-monthly newsletter, The CMTA Report, and the only text devoted to CMT disorders: A Handbook for Primary Care Physicians. Some materials are available in Spanish.

Keywords: Charcot Marie disease, Health education, Hereditary motor sensory neuropathies, Medical research, Oral health, Peroneal muscular atrophy, 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: CJ First Candle is dedicated to safe pregnancies and the survival of infants through the first years of life. Current priorities are to eliminate stillbirth, sudden infant death syndrome (SIDS), and other sudden unexpected infant deaths (SUIDs) with programs of research, education, and advocacy. CJ First Candle also provides compassionate grief support to anyone affected by the death of an infant through a dedicated crisis hotline. The website provides information and resources for new and expectant parents, families who are grieving, and professionals. First Candle merged with CJ Foundation for SIDS in 2017. [Funded by the Maternal and Child Health Bureau]

Keywords: Apnea, Home monitoring, Infant health, Information services, Medical research, SIDS, Support groups

Annotation: Compassionate Friends is a non-profit self-help organization that offers friendship and understanding to families who have experienced the death of a child of any age, from any cause. The group provides support to bereaved parents, grandparents, and siblings. Compassionate friends was founded in 1969; the first of 600 U.S. chapters were organized in 1972. The organization offers brochures & videos. Some materials are available in Spanish. The organization also publishes a catalog and a national magazine, and sponsors several regional meetings and a conference each year. Contact the national office for chapter information in your area.

Keywords: Child death, Support groups, Fetal death, Grief, Perinatal bereavement, Perinatal mortality, Pregnancy loss, Spontaneous abortion

Annotation: The Congenital Heart Information Network (CHIN) is an international organization that provides information, support services, and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them. Services to consumers include referrals, inquiry responses, publications, financial assistance, and reference information. Members can join online support and discussion forums via either a link provided in the membership receipt, or from the Web site. CHIN publishes a newsletter and sponsors conferences.

Keywords: Children with special health care needs, Congenital heart defects, Listservs, Support groups

Annotation: The Cooley's Anemia Foundation (CAF) is a national, not-for-profit health organization dedicated to advancing the treatment and cure of Cooley's Anemia (also known as Thalassemia). CAF, which has over 15 chapters throughout the country, conducts national programs that provide medical research, patient services, awareness, and education. The foundation sponsors the Thalassemia Action Group, a support group for patients and their families. CAF provides information about the disease, referrals to local medical sources, discussion forums, brochures, newsletters, and other information. The foundation sponsors conferences and training seminars. The foundation also provides medical supplies to those patients in need. Materials are available in Chinese, Vietnamese, Cambodian, and Korean. (For a complete list of non-English language materials, contact the Foundation.)

Keywords: Anemia, Beta thalassemia, Hematologic diseases, Support groups, Thalassemia, Thalassemia minor

Annotation: The Costello Syndrome Family Network's main focus is parent-to-parent support. The network also helps qualified researchers learn about Costello syndrome by sharing research opportunities for parents to consent to include their children's information. Through a listserve, bi-annual conferences and the published peer-reviewed articles based on information shared by parents, network families can better understand their children's syndrome and refine the "best practice" toolkit to care for and raise them. The network offers referrals, inquiry responses, and reference information. The network operates in the United States and internationally. The Web site is available in French, German, Italian, Portuguese, and Spanish, in addition to English.

Keywords: Congenital abnormalities, Non-English language materials, Spanish language materials, Support groups, Syndromes

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