Resources and Links
Patient Resources
Several resources are available online. Below is a list that may be of interest to you and your family. If you would like help locating a resource not listed here, please contact us. Please note: information found on these websites is not a substitute for medical advice from a healthcare professional.
General information
- Genetics Home Reference – general information about genetic conditions in easy-to-understand language
- Trust It or Trash It? – a tool designed to help you evaluate health information you find online
- Find A Genetic Counselor – a tool for locating a genetics specialist by zip code
Family history tools
- The Surgeon General’s Family Health History Initiative –an interactive tool for recording your family history
General research opportunities
- ClinicalTrials.gov – registry of federally and privately funded clinical trials in the US and around the world
Chromosomal disorders
- Unique – information about a variety of chromosomal disorders
Ehlers-Danlos syndrome (EDS)
- The Ehlers-Danlos Society – information, research, and support for the EDS community
- Ehlers-Danlos Syndrome International Registry – opportunity to connect with other people and families who have EDS
Huntington disease
- Huntington’s Disease Society of America – information, research, and support for people and families impacted by Huntington disease
Marfan syndrome
- The Marfan Foundation – information, research, and support for people and families who have Marfan syndrome
Neurofibromatosis
- Children’s Tumor Foundation – information, research, and events related to NF1 and NF2
Neuromuscular diseases
- Muscular Dystrophy Association – information, support, resources, and research for a number of different neuromuscular diseases