Search Results: MCH Organizations

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: The American Academy of Physical Medicine and Rehabilitation (AAPM&R) is a national medical society representing physicians who are specialists in the field of physical medicine and rehabilitation. The academy sponsors educational conferences and programs; publishes Archives (a scholarly journal) and Physiatrist (a newsletter); and promotes legislative advocacy. An online discussion forum is open to members.

Keywords: Rehabilitation, Advocacy, Chronic illnesses and disabilities, Legislation, Musculoskeletal diseases, Professional societies

Annotation: The Center for the Advancement of health translates to the public the latest evidence-based research on health, health care, prevention, and chronic disease management, with an emphasis on how social, behavioral, and economic factors affect illness and well-being. The center monitors legislation, commissions reports, communicates information relevant to the translation of research to policy and practice, establishes alliances between scientists and policy makers, and convenes conferences, symposia, and task forces. The center produces and disseminates evidence summaries through the Health Behavior News Service, conducting media training for scientists, scientific training for journalists, and reporting on translation-related events. The center's publications include monthly Facts of Life issue briefings, as well as a variety of reports and workshop proceedings available from the Web site in pdf format.

Keywords: Evidence based medicine, Chronic illnesses and disabilities, Electronic publications, Health policy, Legislation, Preventive health services, Public health, Research

Annotation: The Children's Hopes and Dreams Foundation is a nonprofit foundation that serves children with chronic and life threatening illnesses. The foundation fulfills last dreams, matches special pen-pal friends, and sends Kids Kare packages. Hospitals, hospices, clinics, serious illness camps, Ronald McDonald Houses and Dream/Wish Groups in over 22 countries participate in the program. Publications include a quarterly newsletter for donors.

Keywords: ,Adolescents, Children, Chronic illnesses and disabilities, Pen pals

Annotation: The Coordinating Center for Home and Community Care (CCHCC) is a nonprofit organization that provides care management services for people with complex medical needs, special health care needs, and disabilities who are living in their own homes and communities. The Coordinating Center also provides technical assistance, training, and consultation to professionals who work in the community with people who have such needs. Services to consumers include referrals, reference information, and publications. The center publishes a catalog and a variety of brochures. Some materials are available in Spanish.

Keywords: Home care, Case management, Chronic illnesses and disabilities, Home care services, Refferals, Technical assistance

Annotation: The Directors of Health Promotion and Education (DHPE) builds on principles and practices of health promotion and education to strengthen public health capacity in policy and systems change to improve the health of all and achieve health equity. Resources include news, a calendar of events, community market analyses, online groups, and links to information on careers, health equity, health policy and advocacy, health policy and environmental change, health-related organizations, school employee wellness, school health, state worksite wellness programs, and training and professional development. DHPE is an affiliate of the Association of State and Territorial Health Officials.

Keywords: AIDS, Chronic illnesses and disabilities, HIV, Health education, Health promotion, Injury prevention, Nutrition, Professional societies, Public health programs, Public health services

Annotation: Disability Resources, inc. is a nonprofit 501(c)(3) organization established to promote and improve awareness, availability, and accessibility of information that can help people with disabilities live, learn, love, work and play independently. The organization disseminates information about books, pamphlets, magazines, newsletters, videos, databases, government agencies, nonprofit organizations, telephone hotlines, and online services that provide free, inexpensive, or hard-to-find information to help people with disabilities live independently. Targeted audiences for services and publications include libraries, disability organizations, independent living centers, rehabilitation facilities, educational institutions, and health and social service providers.

Keywords: Chronic illnesses and disabilities, Independent living

Annotation: The Disability Statistics Center is a program funded by the National Institute on Disability and Rehabilitation Research to train individuals and develop statistical information on disability in the United States. It provides statistical information on a wide variety of topics concerning disability in the United States, and responds to questions using a library of books, reports, research papers, and technical information on surveys and databases. The center produces a catalog and a journal, provides publications and reference information for consumers, and sponsors conferences.

Keywords: Chronic illnesses and disabilities, Disabilities, Statistics

Keywords: Special health care needs, Chronic illnesses and disabilities, Employment, Equal opportunities, Health services, Parenting, Poverty, Pregnancy, Sexuality, Violence, Women

Annotation: The Freeman-Sheldon Parent Support Group (FSPSG), now part of the Freeman-Sheldon Rsearch Group, provides emotional support to families affected by Freeman-Sheldon syndrome, also known as whistling face syndrome and cranio-carpal-tarsal dysplasia. Families share their experiences in coping with the syndrome, information about treatments, and pertinent medical literature. The group also supports national and international research on the syndrome.

Keywords: Musculoskeletal diseases, Chronic illnesses and disabilities, Coping, Cranio-carpal-tarsal dysplasia, Facial abnormality, Family support, Information services, Medical research, Parent groups, Support groups, Whistling face syndrome

Annotation: Healthy Food America is a national 501(c)3 nonprofit launched in 2016 to act on scientific evidence to drive change in food policy and industry practice, giving people greater control over their health and reducing diet-related illnesses, such as obesity, diabetes, and heart disease.

Keywords: Chronic illnesses and disabilities, Disease prevention, Nutrition, Organizational change, Policy development, Social change

Annotation: Services to consumers include referrals, publications, and reference information. Materials are available in Spanish. Publications include a catalog and newsletter. The association sponsors some conferences.

Keywords: Hydrocephalus, Chronic illnesses and disabilities, Information services, Parent groups, Spanish language materials

Annotation: Lifeline Pilots is an volunteer organization of private pilots. Pilots, at their own expense, facilitate free air transportation for patients in financial need who require treatment at locations that are far away from their homes. Second and third priority missions include transporting children with disabilities to special camps, parents to visit children undergoing long-term hospitalization in another city, transporting child with disabilities to an adoptive parent, flying persons to identify remains of family members, returning terminally ill patients home, carrying elderly persons to nursing homes, or assisting in disaster relief operations. Lifeline Pilots is not an air ambulance. The organization also publishes a newsletter and provides speakers for engagements.

Keywords: Chronic illnesses and disabilities, Transportation of patients

Annotation: The MAGIC(Major Aspects of Growth in Children)Foundation is a national nonprofit organization serving children and adults with critical and or chronic illnesses affecting their growth, including Precious Puberty, Congenital Adrenal Hyperplasia, Septo Optic Dysplasia, Adult Growth Hormone Deficiency, McCune Albright syndrome, Truner syndrome, Genital and Reproductive Anomalies, Hypophosphatasia, Panphypopituitarism, Congenital Hypothyroidism, Growth Hormone Deficiency, Russell-Silver Syndrome and many other Rare Disorders. Incorporated within MAGIC are families, children, and medical professionals in various fields of children's health. Services available through the foundation include support groups, referrals, a financial assistance fund, a birthday club for kids, kid's pen pal program, community outreach programs, family networking, quarterly newsletters, kids' newsletters, and a toll free parent help line (1-800-3 MAGIC 3). Services to consumers include referrals and publications. Educational brochures available include: Congenital Hypothyroidism, Intrauterine Growth Retardation, Hypophosphatasia, Underlying Conditions of Growth Abnormalities, Growth Hormone Deficiency ,The Most Frequently Asked Questions When Beginning Growth Hormone Therapy, Constitutional Growth Delay, Precocious Puberty, Turner's Syndrome, Congenital Adrenal Hyperplasia, Clinical Hypothyroidism, McCune Albright Syndrome, Psychosocial Issues of Growth Delayed Children, Dental Problems Associated with GHD, Me and My Growth Hormone - A Child's View, Septo Optic Dysplasia, Panhypopituitarism, Failure to Thrive, Russell-Silver Syndrome, Newborns with Non-typical Genital Appearance, When My Child May Have Fertility Problems, Adult Growth Hormone Deficiency, etc. The MAGIC Foundation also publishes a magazine and sponsors an annual convention in July.

Keywords: Chronic illnesses and disabilities, Child health, Congenital adrenal hyperplasia, Congenital hypothyroidism, Development, Down syndrome, Education, Financial support, Growth disorders, McCune Albright syndrome, Russell Silver syndrome, Short stature, Support groups, Support groups, Turners syndrome

Annotation: The National Association of Chronic Disease Directors (NACDD) works to reduce the impact of chronic diseases on the American population by advocating for preventive policies and programs, encouraging knowledge sharing and developing partnerships for health promotion. NACDD has councils and projects that address the needs of specific chronic diseases to advance prevention efforts and provide professional development for chronic disease staff.

Keywords: Chronic illnesses and disabilities, Diseases

Annotation: The National Center for Chronic Disease Prevention and Health Promotion is a component of the Centers for Disease Control and Prevention. Divisions of the center that are relevant to maternal and child health include the Division of Adolescent and School Health, Division of Nutrition and Physical Activity, Division of Diabetes Translation, Division of Cancer Prevention and Control, Division of Reproductive Health, Division of Oral Health, and Office on Smoking and Health.

Keywords: Adolescent health, Chronic illnesses and disabilities, Community health services, Community programs, Data, Health promotion, Medical research, Nutrition education, Nutrition monitoring, Nutrition policies, Nutrition programs, Nutrition research, Oral health, Outreach, Physical activity, Prevention programs, Public health nutrition, School health, Sexual health, Sexually transmitted diseases, Smoking, Women', s health

Annotation: The National Center on Physical Activity and Disability's mission is to encourage and support people with disabilities who wish to become more active. NCPAD works to promote health benefits among people with disabilities through increased participation in all types of physical activity, including recreational programs, specific sports, exercise techniques, fitness activities, and adaptive equipment. It is a comprehensive electronic information center that offers telephone and online access to resources. The Web site offers downloadable fact sheets and monographs; video clips; discussion groups; a calendar of upcoming conferences, events, and meetings; summaries of important research findings; a monthly newsletter; and a searchable database of programs and services available nationwide.

Keywords: Chronic illnesses and disabilities, Physical activity

Annotation: The National Coalition for Cancer Survivorship (NCCS) is a survivor-led advocacy organization that works exclusively on behalf of the country's more than 9 million cancer survivors and the millions more touched by this disease. Founded in 1986, NCCS raises awareness of cancer survivorship through educational outreach efforts, works to empower cancer survivors, and advocates for quality cancer care for all Americans. Services to consumers include referrals and publications including the Cancer Survival Toolbox. Materials are available in Spanish. The oranization also sponsors workshops, conferences, and an open listserv (anyone can join by e-mailing [email protected]).

Keywords: Cancer, Chronic illnesses and disabilities, Listservs, Support groups

Annotation: The National Diabetes Education Program (NDEP) works with partners to reduce the burden of diabetes and prediabetes by facilitating the adoption of proven approaches to prevent or delay the onset of type 2 diabetes and the complications of diabetes. The website describes NDEP's partnership activities and provides information on becoming a partner. The website also contains a searchable database of educational resources, lists resources for specific groups, and provides training and technical assistance resources. NDEP is a program of the National Institutes of Health and the Centers for Disease Control and Prevention.

Keywords: Chronic illnesses and disabilities, Diabetes, Health promotion, Outreach, Prevention programs

Annotation: The National Family Caregivers Association (NFCA) is a nonprofit organization that works to improve the quality of life for America's over 50 million family caregivers of chronically ill or disabled loved-ones and to educate the public about the difficulties caregivers face. The association emphasizes the needs and problems of family caregivers as separate and distinct from the needs of the people for whom they care. Services to consumers include referrals and publications. Publications include Take Care!, a quarterly self-help newsletter for caregivers. The association also hosts a list serve and sponsors training seminars.

Keywords: Caregivers, Chronic illnesses and disabilities, Families, Family centered services, Support groups