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Genetic Alliance publications are aimed at emerging and experienced advocacy leaders, researchers, healthcare providers, and policymakers. All of our publications are available for free downloading and posting, as long as Genetic Alliance is credited as the author and the content is not modified in any way. To order bulk copies of any publication, fill out this (online format) form and direct any questions to Rachel Koren at rkoren@geneticalliance.org.

 
Children and Youth with Special Healthcare Needs in Healthy People 2020
HP2020ConsumerPerspectiveGenetic Alliance and Family Voices collaborated with the Division of Services for Children with Special Health Needs in the Health Resources and Services Administration’s Maternal and Child Health Bureau to create a family and consumer perspective on the national health promotion agenda and how it relates to CYSHCN and their families.
 
Does It Run In the Family? Toolkit
"Does It Run In the Family?" booklet cover The Does It Run In the Family? toolkit combines family health history, oral traditions, and genetics in order to help individuals and families gather their health history and use that information to make positive health choices. The toolkit consists of two booklets and supplementary materials that together help people collect, organize, and understand their family health history. Both booklets are generally applicable but are designed to be customized by families and communities in order to better reflect their health concerns.
 
How Do I Talk to My Family About My Genetic Condition?
Gaucher booklet cover It is not only important to collect family health history from your relatives; it is similarly important to tell them what you know about your own health. Genetic Alliance, in collaboration with Genzyme, created resources (in English and Spanish) on how to share a diagnosis of a genetic condition with your family. The booklets are specifically about Gaucher, Fabry, and Pompe diseases, but the content can be applied to many conditions. We also worked with the CDC Office of Public Health Genomics to create three complementary pamphlets (in English and Spanish) on screening and genetic testing for Lynch syndrome and the importance of talking to family about this hereditary cancer syndrome.
 
How-to Guides
How-to Guides Genetic Alliance offers several practical guides that provide valuable tips for succeeding in genetic advocacy work.
 
 
 
 
Making Sense of Your Genes: A Guide to Genetic Counseling
Genetic Counseling booklet cover This booklet, available in English and Spanish, provides a consumer-friendly introduction to genetic counseling and its application. The guide includes information on preparing for a genetic counseling session and the different specialties in the field.
 
 
Genetic Alliance Monographs
Genetic Alliance Monographs Genetic Alliance has five monographs to date: "Genomics, Cancer Care & Advocacy," "Genetic Testing Stories," "Eyes on the Prize: Truth Telling about Genetic Testing," "Community Centered Family Health History: How Do You Make Research Community-Specific and Universally-Relevant?" and "Trust It or Trash It? Creating and Assessing Genetic Health Information." This series provides an in-depth look at specific topics in the worlds of genetics, health, and advocacy, from personal and community chronicles to high-level discussion and analysis.
 
Understanding Genetics: A Guide for Patients and Health Professionals
Understanding Genetics manual cover This manual covers basic genetics concepts for health professionals, complemented with consumer-friendly information about diagnoses of genetic conditions.

Publications Archive

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Except where otherwise noted, content on this site is licensed under a Creative Commons Attribution 3.0 License.