Search Results: MCH Organizations

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: Founded in 1983, the Aplastic Anemia & MDS International Foundation (AA&MDSIF) is a nonprofit charitable organization with the following mission: to serve as a resource for patient assistance and emotional support; to provide educational materials and updated medical information; and to financially support research to find effective treatment for aplastic anemia (AA), myelodysplastic syndromes (MDS), and other related bone marrow failure diseases. Services to consumers include inquiry responses, publications, and reference information. Some materials are available in Spanish, French, and other languages. The foundation publishes a newsletter and sponsors conferences.

Keywords: Blood and lymphatic diseases, Fanconis anemia, Neural tube defects

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 Diamond Blackfan Anemia Registry (DBAR) is an information resource that collects clinical and demographic data on people with Diamond Blackfan anemia (DBA) and their families. Services to consumers include referrals, publications, and reference information. A family run support group, the Diamond Blackfan Anemia Foundation, Inc. publishes a newsletter with updates.

Keywords: Constitutional erythroid hypoplasia, Diamond-Blackfan anemia

Annotation: The Fanconi Anemia Research Fund Inc. raises funds for research to find effective treatments and a cure for Fanconi anemia and provides education and support services to affected families and their physicians worldwide. Publications include the biannual FA Family Newsletter and Science Letter, and a handbook for families and their physicians on Fanconi anemia. The organization also sponsors conferences. Some materials are available in Spanish and a telepone interpreters service is immediately available. F.A. Research Fund also maintains a restricted listserv (for those with Fanconi anemia or who are parents of a Fanconi anemia child).

Keywords: Fanconis anemia, Parent groups

Annotation: The Sickle Cell Foundation of Greater Montgomery is a nonprofit community service organization. Services offered by the Foundation include sickle cell education, testing, counseling, supportive services and referral services. The Foundation was founded in January of 1982. The Foundation serves nine counties in central and southern Alabama. These counties include Montgomery, Autauga, Elmore, Butler, Lowndes, Chambers, Tallapoosa, Crenshaw, and Coffee counties. The main objectives of the Foundation are to give accurate information about sickle cell disease and related hemoglobinopathies, to provide testing and diagnostic services to interested persons, to counsel individuals with positive test results so they can make informed decisions about their lives and to provide supportive services for clients and their family members.

Keywords: Advocacy, Alabama, Anemia, Blacks, Bllod and lymphatic diseases, Ethospecific disorders, Hemoglobinopathies, Screening, Sickle cell disease

Annotation: The Sickle Cell Foundation of Palm Beach County, Inc. seeks to improve the quality of life for people affected by Sickle Cell Disease or trait and their families, while educating the public about this very serious blood disorder. Services are also provided to persons with other health challenges and their families.

Keywords: Advocacy, Anemia, Blacks, Bllod and lymphatic diseases, Ethospecific disorders, Florida, Hemoglobinopathies, Screening, Sickle cell disease