Search Results: MCH Organizations

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: The AHEPA (American Hellinic Educational Progressive Association) Cooley's Anemia Foundation was established in 1959 and has more than 950 chapters nationwide. The organization offers education and works to raise funds for research. Fact sheets are available in English and Greek.

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

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 Allergy and Asthma Network/Mothers of Asthmatics, Inc. (AAN/MA) is a national nonprofit network of families working to overcome allergies and asthma. AANMA produces practical resources, educational materials, and programs to address the health and family needs of people with asthma and allergies. The organization provides reference information to consumers through its toll-free help line and publishes Allergy & Asthma Today magazine and the monthly newsletter MA Report. Some materials are available in Spanish.

Keywords: Allergies, Asthma, Respiratory diseases

Annotation: The Allergy/Asthma Information Association (AAIA) is a federally registered Canadian charity organization that helps people with allergies and their families cope with hay fever, food allergies, asthma, and many other similar conditions. The association provides an allergy and asthma information service, educational workshops and seminars, and advocacy programs for the interests of people with allergies and asthma. Issues of concern include ingredient listings on packaged foods and cosmetics, content labeling on fabrics and clothing, and labeling of nonmedical ingredients on medications. Publications include a newsletter, allergy cookbooks, and over 40 Infoletters on topics regarding food allergies, asthma, and useful tips. Most publications are available in French. The Association sponsors conferences and training seminars. AAIA is affiliated with the Canadian Society of Allergy and Immunology, a professional body of allergy specialists who medically review their publications.

Keywords: Allergies, Asthma, Respiratory diseases

Annotation: The Alpha-1 Association is a member-based nonprofit organization founded in 1991 to identify those affected by Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improve the quality of their lives through support, education, advocacy, and research. The association has over 60 volunteer-led support groups around the US which are supported through annual grass roots grants. The education program includes an annual national conference and co-sponsorship of regional Alpha-1 Education Days with the Alpha-1 Foundation. The advocacy program focuses on access to care; maintaining and extending Medicare benefits; genetic non-discrimination; increasing public health funding; traveling with supplemental oxygen; organ allocation for lung transplantation and includes working with the Congressional COPD Caucus to further its goals.

Keywords: Alpha-1-antitrypsin deficiency, Metabolic diseases, Patient identification

Annotation: The ALS Association, previously known as Amyotrophic Lateral Sclerosis Association (ALSA), supports research on amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. Association activities include research funding, patient services, public and professional education, chapter development, and the establishment of ALS clinical service centers nationwide. Services provided to consumers include referrals, publications, and reference information. Publications include manuals on managing ALS, Basic Home Care, ALS and The ALS Association, a set of five videos, Reason for Hope (a newsletter published three times a year), and Scientific Briefings (published 2–4 times a year). The association also sponsors conferences.

Keywords: Amyotrophic Lateral Sclerosis, Medical research, , Motor neuron disease, Neuromuscular diseases

Annotation: The American Academy of Allergy, Asthma, and Immunology (AAAAI) is a professional society of physicians specializing in allergy, asthma, and allergic diseases. The Academy enhances and supports allergy/immunology programs; fosters and disseminates research; provides advocacy and support for patients and the allergy/immunology specialists who provide their care; and provides education and information for members, other healthcare professionals, patients and the public. The Web site provides online access to brochures, allergy guides, tip sheets, research findings, and video guides. Included are school tools, parent resources, a food allergy library, The Virtual Allergist™ -- an interactive tool to help diagnose asthma and allergy symptoms -- and The National Allergy Bureau™ -- the section of the AAAAI's Aeroallergen Network that is responsible for reporting current pollen and mold spore levels to the public.

Keywords: Allergies, Asthma, Immunologic diseases, Respiratory diseases

Annotation: Founded in 1938, the American Academy of Dermatology (AAD) is a professional society of medical doctors specializing in skin disease. The organization conducts educational programs, provides placement , and compiles statistics. Publications include a directory, a newsletter, and the Journal of the American Academy of Dermatology. Some materials are available in Spanish. ADD also maintains a listserv.

Keywords: Skin diseases

Annotation: The American Academy of Neurology (AAN), established in 1948, is an international professional association of more than 20,000 neurologists and neuroscience professionals dedicated to providing the best possible care for patients with neurological disorders. AAN publishes the Patient Information Guide for Neurology, a comprehensive directory of patient- and family-oriented publications and services for people with neurologic disorders. The guide includes information sources for more than 300 neurologic disorders, and it lists the addresses, E-mail addresses, Internet sites, and telephone numbers of more than 185 organizations that provide patient information services. Publications include a catalog, a newsletter, and a journal. AAN also sponsors conferences and training seminars.

Keywords: Neurology, Nervous system diseases, Neurologists, Professional societies

Annotation: The American Academy of Periodontology (AAP) seeks to advance the periodontal health of the public and to represent and serve the academy's members. Their Web site provides a wealth of information on periodontal disease including consumer fact sheets, frequently asked questions, and other educational material. It also includes a database for finding a periodontist.

Keywords: Dental societies, Oral health, Periodontal diseases

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 American Association for Respiratory Care (AARC) is a national professional organization sponsored by the American Thoracic Society, the American College of Chest Physicians, and the American Society of Anesthesiologists. The association brings together more than 36,000 respiratory therapists, pulmonary technologists, nurses, physicians, home health providers, and home medical equipment suppliers. Activities include an annual meeting, symposia, and continuing education and accreditation programs. Publications and reference information is provided to consumers. Publications include AARC Times, a monthly news and feature magazine for respiratory provessionals, and Respiratory Care Journal, a monthly science journal publishing respiratory therapy related studies and research. Annual product catalogs feature various support materials designed for the healthcare professional as well as patients.

Keywords: Education, Respiratory diseases

Annotation: The American Association of Blood Banks (AABB) promotes the highest standards of care and service to patients, donors, other health care professionals, and the public by providing leadership in blood procurement, distribution, and other activities related to blood banking and transfusion medicine. More than 2,000 institutional members (community and hospital blood banks and hospital transfusion services) collect the nation's blood supply and transfuse more than 80 percent of the supply. Individual members include 8,000 physicians, scientists, medical technologists, administrators, blood donor recruiters, nurses, and public-spirited citizens. AABB sponsors conferences and training seminars and publishes a newsletter and journal. Some materials are available in Spanish and French and one publication in available in Japanese.

Keywords: AIDS, Blood banks, Cardiovascular diseases, HIV, Hematologic diseases, Hepatitis

Annotation: The American Association of Kidney Patients (AAKP) works to educate and support kidney patients and their family members. Its mission is to improve the lives of fellow kidney patients and their families by helping them deal with the physical, emotional and social impact of kidney disease. Members are people on hemodialysis or peritoneal dialysis, people with kidney transplants, their families and friends, and professionals in the dialysis field. Publications include a newsletter, a bimonthly magazine and a magazine for those who may be at risk for kidney disease. Several materials are available in Spanish. The organization sponsors conferences and hosts an annual convention.

Keywords: Kidney diseases, Chronic kidney failure, Dialysis, Organ transplantation, Patient education

Annotation: Services to consumers include physican referrals, information referrals, publications, and reference information. The Association publishes a quarterly newsletter, advocates for research, and sponsors public forums and scientific conferences.

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

Annotation: The American Brain Tumor Association (ABTA) provides publications which address brain tumors, their treatment, and coping with the disease; nationwide resource listings of brain tumor support groups and physicians offering investigative treatments;Connections pen-pal program; a national brain tumor symposium for patients and their families; and free social service consultations. ABTA also sponsors regional Town Hall meetings across the country which focus on state-of-the-art treatment options. ABTA funds brain tumor research at institutions throughout the United States and Canada. A tri-annual newsletter, the Message Line, describes those research advances as well as other ABTA activities. ABTA also publishes booklets.

Keywords: Brain diseases, Brain tumors, Cancer, Information services, Medical research

Annotation: The American College of Cardiology (ACC) works to foster optimal cardiovascular care and disease prevention through professional education, promotion of research, and leadership in standards development and health care policy formulation. ACC publishes newsletters, a journal, and a catalog and sponsors conferences, training seminars, and workshops.

Keywords: Cardiovascular diseases, Heart diseases, Medical education, Policy development, Professional societies

Annotation: The American College of Chest Physicians (ACCP) is a medical specialty society of physicians, surgeons, allied health professionals, and academicians who specialize in diseases of the chest: pulmonology, cardiology, cardiovascular and cardiothoracic surgery, hypertension, critical care medicine, and related disciplines. AACP promotes the prevention and treatment of diseases of the chest through leadership, education, research, and communication. The college sponsors an annual meeting, offers CME courses, publishes a journal, provides online resources, and advocates for improved health care services.

Keywords: Professional societies, Advocacy, Allied health professionals, Cardiovascular diseases, Health services, Hypertension, Medical education, Physicians