Educational Materials Produced by NERGG
Historically, NERGG has worked to provide educational materials for professionals and consumers. Below is a listing of many of the publications and materials NERGG produced. Copies of these can be purchased by contacting the NERGG office.
The Genetic Resource. No longer in publication, this was a semi-annual publication made available to all NERGG members and to a mailing list of the general public. Vol. 12, Nos. 1&2 includes article "Stored DNA Samples: What You Should Know. Miscellaneous issues available.
The Genetic Resource Supplement. A Listing of State Genetic Programs, Comprehensive Genetic Counseling Centers, & Consumer Support Organizations in New England. The Supplement was compiled biannually and made available to all members of NERGG, State health department offices, and interested members of the public. Last issue available, 1999.
Thalassemia Intermedia, A Region I Conference. This is a compilation of proceedings from a conference held in New England in 1996.
Special Issue of The Genetic Resource, Vol. 10, No. 2: Optimizing Genetics Services in a Social, Ethical, and Policy Context. The book has three sections: a discussion of what consumers want; a set of detailed suggestions for responding to ethical problems in genetics; and a description of measures to optimize interactions between consumers and providers in clinical settings. This document is intended as a reference for training providers and a means of encouraging discussion in consumer groups. This is a companion to the video Optimizing Genetic Services: Consumers Speak Out.
Special Issue of The Genetic Resource, Vol. 11: The Transition to Adult Living Project: Health Services for Young Adults with Spina Bifida. compiled aspects of the project as it was developed across three New England Spina Bifida Programs into a manual for those who work with clients to assure quality health services into adulthood. This program is suitable for populations beyond those with spina bifida. This document is intended as a reference for the pediatric sub-specialty team, associated pediatric specialty providers in the institution, and adult health providers or administrators that may influence this process of referral of care.
Guidelines for the Management of Students with Genetic Disorders: A Manual for School Nurses, Fifth Edition. The school nurse manual covers general topics for the school nurse and chapters on five specific genetic disorders: Sickle Cell Disease, Myelodysplasia, Cystic Fibrosis, Muscular Dystrophy, and Diabetes.
Sickle Cell Disease Related Pain Assessment and Management. As a result of a regional conference held in 1994, three publications are available to interested members of the general public: A Guide for Patients & Parents, Quick Reference Guide for Clinicians, and Conference Proceedings .
Just Like Me? Children Talk About Spina Bifida. This award-winning video was proceed by the Northeast Myelodysplasia Association (NEMA) in 1993. It is for use in a school situation, particularly to help able-bodied classmates understand their differently-abled peers. Other audiences definitely would find it informative. This video comes with a 28-page guide with facts about Spina Bifida, discussion and activities, and resources, as well as a feedback form.
Thalassemia. This video was produced to assist health care professionals, community workers, and other educators provide information about thalassemia to Southeast Asian communities. The conversational format includes medical and genetic aspects of thalassemia, as well as carrier screening, prenatal diagnosis, and genetic counseling. Available in three Southeast Asian languages (Khmer, Laotian, and Vietnamese), the English translation is included on all language versions of the video.
Optimizing Genetic Services: Consumers Speak Out. This video describes in personal terms the highlights of what both consumers and providers agreed should be part of optimal genetics services, using descriptions of lived experiences. It is a companion to the Special Issue of The Genetic Resource, Vol. 10, No. 2: Optimizing Genetics Services in a Social, Ethical, and Policy Context.
Prenatal Tests. This booklet contains easy-to-read basic information on prenatal testing and is available in eight languages: English, Chinese, French, Khmer, Laotian, Portuguese, Spanish, and Vietnamese.