Annotation: This booklet is a collection of games and puzzles designed to help children with thalassemia deal with and understand their condition and its treatment. Mazes, crossword puzzles, word games and other activities, along with answer keys, are included.

Keywords: Thalassemia

Annotation: This videotape provides information on hemoglobin E, anemia, and basic genetics. It describes how genes are inherited, and kinds of health problems different kinds of hemoglobin cause (anemia and thalassemia). It is supplemented by three pamphlets: Questions about thalassemia, Questions about hemoglobin E, and Genetics—The story of genes. The tapes and pamphlets are available in English, Laotian, and Cambodian. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.org Available for loan.

Keywords: Anemia, Asian language materials, Consumer education materials, Genetics, Thalassemia, Videotapes

Annotation: These proceedings are from a conference sponsored by the New England Thalassemia Program held in Boston on November 14, 1996. They define thalassemia intermedia, present data from patients, discuss research at the National Institutes of Health on the use of sodium phenylbutyrate and hydroxyurea to stimulate fetal hemoglobin, and analyze the molecular basis of the disease. Other presentations deal with the assessment of iron overload, the use of chelation therapy, splenectomy, and infection control. Finally, there is a panel discussion about treatment approaches. The proceedings are published as a special issue of The Genetic Resource (vol 11, no. 2). [Funded by the Maternal and Child Health Bureau]

Contact: New England Thalassemia Program, Children's Hospital, 300 Longwood Avenue, Boston, MA 02115, Telephone: (617) 355-5943 Fax: (617) 355-7940 Price unknown. Document Number: ISBN 1-57285-041-8.

Keywords: Conference proceedings, Genetic disorders, Hematologic diseases, Thalassemia

Annotation: This book of illustrated lessons in Spanish is intended for a health care provider to use in educating parents of children with sickle cell disease about the cause, symptoms, and treatment of the disease. The pages are laid out so that when the book is folded open one side displays information for the parents and the other side displays more detailed information for the health care provider. The lessons explain the genetics of sickle cell trait; living with sickle cell anemia; other hemoglobinopathies; the risks of reproduction; and the various types of thalassemia.

Contact: IG Laboratories, Building A, Suite 150, 5775 Glenridge Drive, Atlanta, GA 30328, Telephone: (800) 255-2357 Price unknown.

Keywords: Parent education, Sickle cell disease, Spanish language materials, Thalassemia

Annotation: This videotape is designed to tell Southeast Asian audiences about thalassemia before they have children. It shows children playing then a genetics counseling session with a young woman. It describes types of thalassemia, how it is inherited, how children are affected and treated, blood testing to determine if parents have the thalassemia trait, testing to see if an unborn infant has thalassemia, and choices parents can make about a pregnancy. The video is available in four versions, each with English plus a different Asian language (Hmong, Khmer, Lao, and Vietnamese). [Funded by the Maternal and Child Health Bureau]

Keywords: Asian language materials, Audiovisual materials, Consumer education materials, Genetics counseling, Thalassemia, Videotapes

Annotation: These proceedings include the presentations, discussions, and recommendations from a conference that brought together public health planners, health care providers, health educators, bilingual/bicultural human service workers, community and religious leaders, refugee service providers, and genetic counselors to explore in depth issues inherent in providing culturally sensitive and appropriate services to Southeast Asians at risk for thalassemia. Topics covered include Southeast Asian refugees in Massachusetts, testing for hemoglobinopathies in Southeast Asians, cultural perspective, hemoglobinopathy screen in an Asian health center, and Southeast Asian health center patient's knowledge and attitudes toward genetic services and thalassemia. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Education in Maternal and Child Health, Georgetown University, Box 571272, Washington, DC 20057-1272, Telephone: (202) 784-9770 Fax: (202) 784-9777 E-mail: mchgroup@georgetown.edu Web Site: http://www.mchlibrary.org Photocopy available at no charge. Document Number: HRSA Info. Ctr. MCHE050.

Keywords: Asian Americans, Child health, Culturally competent services, Thalassemia

Annotation: This pamphlet simply explains the genetic basis for thalassemia. It is available in English, Cambodian, and Laotian. It augments the information in a related videotape "HGB E, Anemia, and Basic Genetics." [Funded by the Maternal and Child Health Bureau]

Contact: Providence Ambulatory Health Care Foundation, 469 Angell Street, Providence, RI 02906-4490, Telephone: (401) 444-0400 Fax: (401) 444-0421 Price unknown.

Keywords: Asian language materials, Consumer education materials, Non English language materials, Thalassemia

Annotation: This pamphlet simply explains how hemoglobin E can be inherited and how it causes thalassemia. It is available in English, Cambodian, and Laotian. It augments the information in a related videotape "HGB E, Anemia, and Basic Genetics." [Funded by the Maternal and Child Health Bureau]

Contact: Providence Ambulatory Health Care Foundation, 469 Angell Street, Providence, RI 02906-4490, Telephone: (401) 444-0400 Fax: (401) 444-0421 Price unknown.

Keywords: Asian language materials, Consumer education materials, Non English language materials, Thalassemia

Annotation: This educational brochure discusses what thalassemia is, how you get it, who inherits it, alpha and beta thalassemia disease, thalassemia trait, screening tests, and important facts for consumers. It was funded by the Maternal and Child Health Bureau and Office of Minority Health. It is available in English, Chinese, Korean, Laotian, Samoan, Tagalog, and Vietnamese. [Funded by the Maternal and Child Health Bureau]

Contact: HRSA Information Center, P.O. Box 2910, Merrifield, VA 22116, Telephone: (888) 275-4772 Secondary Telephone: (877) 489-4772 Fax: (703) 821-2098 E-mail: ask@hrsa.gov Web Site: http://www.ask.hrsa.gov Available at no charge. Document Number: HRSA Info. Ctr. MCHF054 (English), MCHF055 (Chinese), MCHF056 (Korean), MCHF057 (Laotian), MCHF058 (Tagalog), MCHF059 (Vietnamese).

Keywords: Asian Americans, Asian language materials, Patient education materials, Thalassemia

Annotation: This directory lists the board of directors, administration, committees, committee chairs, liaisons, member organizations, and committees of the Council of Regional Networks for Genetic Services (CORN). An alphabetical listing of CORN members and affiliates is also included. [Funded by the Maternal and Child Health Bureau]

Contact: HRSA Information Center, P.O. Box 2910, Merrifield, VA 22116, Telephone: (888) 275-4772 Secondary Telephone: (877) 489-4772 Fax: (703) 821-2098 E-mail: ask@hrsa.gov Web Site: http://www.ask.hrsa.gov Available at no charge. Document Number: HRSA Info. Ctr. MCHK164 (1998).

Keywords: Directories, Genetic screening, Hemoglobinopathies, Sickle cell disease, Thalassemia