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: AboutFace is an international organization providing information services, educational programs, and emotional networking support to individuals with facial disfigurements and their families. Membership includes children, adults, and families affected by facial differences, health care and social service providers, dental professionals, and educators. Publications include a bimonthly newsletter, brochures and booklets on medical conditions, treatment issues/plans and socialization issues etc., and a series of educational programs for elementary schools.

Keywords: Apert syndrome, Cleft lip, Cleft palate, Congenital port wine stain, Craniofacial abnormalities, Crouzon syndrome, Goldenhar syndrome, Naevus flammeus

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

Annotation: The American Liver Foundation (ALF) is a national nonprofit organization dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education, and advocacy on behalf of those at risk of or affected by liver disease. The foundation has state and regional chapters across the United States. Services to consumers include publications and reference information.

Keywords: Hepatitis, Alagille syndrome, Alpha-1-antitrypsin deficiency, Galactosemia, Liver cirrhosis, Liver diseases, Organ transplantation

Annotation: The American Lung Association (ALA) is a voluntary health organization dedicated to the prevention, cure, and control of all types of lung disease through public health education, advocacy, and research. ALA monitors air quality and publishes reports that detail the effects of tobacco, pollutants, and other environmental factors on the air, our communities, and our world. The Web site provides access to downloadable reports; indepth resources related to lung health, lung disease, and air quality at home, at school, outdoors, and at work. Anyone can register to receive ALA's free electronic newsletters.

Keywords: Asthma, Infants, Public health education, Lung diseases, Prevention, Respiratory distress syndrome, SIDS, Smoking during pregnancy

Annotation: The Angelman Syndrome Foundation (ASF)- works to advance the awareness and treatment of Angelman Syndrome. ASF provides education and information, research, and support for individuals with Angelman Syndrome, their families, and other concerned parties. Some materials are available in Spanish and in Hebrew. The Foundation hosts an electronic forum for members and sponsors a biennial National Conference to bring together Angelman families and professionals.

Keywords: Angelman syndrome

Annotation: The Association for Children with Down Syndrome (ACDS) Strives to provide an environment that helps infants, toddlers, and preschool children with Down syndrome to participate in mainstream school and community activities through its early intervention and pre-school service. In addition to conducting research, ACDS provides resources, referrals, and programs for children 5-21 with Down syndrome and helps educate the community through workshops, conferences, and publications (including the bimonthly ACDS Newsletter). A catalog of publications and audiovisual materials is available, and materials are provided in Spanish. ACDS also provides residential services to young adults with Down Syndrome and other developmental disabilities.

Keywords: Chromosome abnormalities, Down syndrome, Family support services, Geneticdisorders, Information services, Medical research, Mental retardation, Public awareness materials

Annotation: The Association of Gastrointestinal Motility Disorders (AGMD), formerly known as the American Society of Adults with Pseudo-Obstruction (ASAP), is an international nonprofit organization which serves as an educational resource center on digestive motility disorders.  The organization provides publications, physician referrals, medical reference articles, educational materials, and opportunities for networking among patients and members of the medical and scientific communities.  In addition, AGMD provides a forum for patients suffering from digestive motility disorders as well as their families and physicians.

Keywords: Pseudo-obstruction syndrome

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: 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 Center for Jewish Genetic Diseases (formerly the National Foundation for Jewish Genetic Diseases) at The Mount Sinai Medical Center is devoted to the study of diseases that affect Ashkenazi Jews. The Center's missions are: (1) to improve the diagnosis, treatment, and counseling of patients and their families suffering from Jewish genetic diseases and (2) to conduct intensive research to combat these inherited diseases. The Center publishes scientific articles, presents papers at national meetings, sponsors international meetings, and collaborates with other researchers in the process of making discoveries and developing therapies.

Keywords: Metabolic diseases, Bloom syndrome, Canavan disease, Familial dysautonomia, Gauchers disease, Information dissemination, Mucolipidosis, Niemann Pick disease, Public awareness materials, Tay Sachs disease, Torsion dystonia

Annotation: CFC (Cardio-Facio-Cutaneous Syndrome) International (formerly the CFC Family Network, is an international support group for Cardio-Facio-Cutaneous Syndrome. It holds conferences every three years and publishes a quarterly newsletter and a guide for parents. A photo album of children is sent to all registered families, and matching and an address book are provided. The network has a medical advisory staff and works to facilitate research on this rare syndrome.

Keywords: Cardio-facio-cutaneous syndrome

Annotation: The CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) Association of America (CFIDS) is a nonprofit organization dedicated to conquering Chronic Fatigue and Immune Dysfunction Syndrome by supporting research, education and public policy programs. The association serves as a clearinghouse for information on chronic fatigue syndrome. Members are people with chronic fatigue syndrome, their families, and others interested in the disease. The association provides information packets at no charge to the public, provides referrals, publishes The CFIDS Chronicle, sponsors conferences, and provides funding.

Keywords: Balance disorders, Chronic fatigue syndrome, Cytomegalovirus infections, Epstein-Barr virus, Human B-lymphotropic virus, Immunologic diseases

Annotation: The Chromosome 18 Registry and Research Society is a nonprofit educational and research organization that locates people with chromosome 18 anomalies, educates families and the public on the prognosis and treatment of related disorders, links these families and their physicians to the research community, and encourages, conducts, and publishes research on topics that affect these families. The society maintains a database of families and interested persons, sponsors an annual conference, operates a parent network, and publishes a newsletter, Chromosome 18 Communiqué. The society sponsors a list service that is open to the public through their web site and also offers responses to inquiries from consumers.

Keywords: Chromosome abnormalities, Chromosome 18, Edwards syndrome, Genetic disorders, Health education, Listservs, Medical research, Medical research, Patient identification, Ring 18, Tetrasomy 18p

Annotation: The Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America is a charitable organization dedicated to conquering chronic fatigue and immune dysfunction syndrome (CFIDS) through programs in CFIDS education, public policy, and research. Publications include The CFIDS Chronicle (issued quarterly) and The CFS Research Review (published semi-annually).

Keywords: Chronic fatigue syndrome, Myalgic encephalomyelitis, Spanish language materials

Annotation: The Coalition for Heritable Disorders of Connective Tissue (CHDCT) consists of 14 member organizations representing various heritable disorders of connective tissue. The goals of the CHDCT are to bring about greater awareness and understanding of heritable disorders of connective tissue in medical professions and in the public at large; to encourage teaching in the schools; to train health practitioners to help identify, diagnose, and treat various heritable connective tissue disorders; and to foster research. CHDCT sponsors workshops. Publications include fact sheets.

Keywords: Connective tissue diseases, Marfan syndrome

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: Services to affected families and medical professionals include referrals, publications, and reference information. The CCHS Network sponsors conferences and publishes newsletters twice annually.

Keywords: Congenital central hypoventilation syndrome, Respiratory diseases, Sleep apnea syndrome, Sleep disorders