Diagnosis Library

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FVND has many fact sheets and publications that are available to you for your usage and/or dissemination

Publications

Publications 2

Websites

Genetic and Rare Conditions, University of Kansas Medical Center – Alphabetized links to Information on genetic conditions and birth defects and links to support groups and clinics.

  • Genetic Alliance: It is a nonprofit health advocacy organization. In addition to information about genetics related organizations, the non profit also helps set up listserv and websites.
  • Clinical Trials: This is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world.

The Waisman Center

  • Specific Diagnoses Card Catalog: This Card Catalog can help you find information about specific disabilities.
  • Centers For Disease Control (CDC): It is a part of the U.S. Department of Health and Human Services, and is the primary Federal agency for conducting and supporting public health activities in the United States.
  • Chromosome Disorder Outreach (CDO): This site is managed primarily by volunteer parents of children with rare chromosome disorders. It has an extensive library, detailed registry, newsletters, research opportunities, interaction with their medical advisory board, and a listserv for families.
  • National Organization for Rare Disorders: NORD has patient assistance programs such as Medication Assistance, Disease Specific Programs and helps pay for travel and lodging for patients participating in clinical trials.
  • American Sign Language: This is a free online dictionary with over 7200 ASL signs as well as ASL for babies and conversational phrases.

Parent and Family Support Library

FVND has many fact sheets and publications that are available to you for your useage and/or dissemination

(Link to our publications pages)

 

Websites

  • National Respite Network- This website includes a National respite Locator, where you will be able to find Georgia based respite providers.
  • Family Caregiver Alliance: National Center on Caregiving
  • Care.com
  • The Center For Children With Special Needs: What helps you? Parents share ideas and strategies for managing their child’s special health care needs in daily life

Rosalynn Carter Institute for Caregiving

 

Fact Sheets

  • Grandparents raising grandchildren

A focused look at caregivers of children with special needs-Report 2009

Guides for Families

  • Understanding Genetics
  • Handbook on Genetics
  • Genetic Terms and Definitions