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

Family history tools

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)

Huntington disease

Marfan syndrome

  • The Marfan Foundation – information, research, and support for people and families who have Marfan syndrome

Neurofibromatosis

Neuromuscular diseases