Are there good support groups for Canavan disease?
There are support groups for Canavan disease including the Canavan Foundation, the Canavan Research Foundation, and the Canavan Research Illinois. The United Leukodystrophy Foundation, the National Tay-Sachs and Allied Diseases Association, and the Jewish Genetic Diseases Consortium also provide information and support for families affected by Canavan disease.
Canavan Disease Research (CDR), an international divsion of Canavan Research Illinois, maintains a patient registry called the Canavan patient insight network (PIN). The PIN helps unite Canavan families throughout the world, and enables CDR to better understand the true incidence and prevalence of Canavan disease worldwide.
Matalon R, Michals-Matalon K. GeneReviews website. Updated August 11, 2011. Retrieved April 29, 2016, from http://www.ncbi.nlm.nih.gov/books/NBK1234/
Canavan disease. National Organization for Rare Disorders website. Updated 2015. Retrieved on May 1, 2016 from http://rarediseases.org/rare-diseases/canavan-disease/