What should I do if I do not have access to an adrenoleukodystrophy specialist?
Finding a genetic counselor and/or a medical geneticist near you would be an ideal way to make sure you have the information you need for your adrenoleukodystrophy to be managed correctly. A medical geneticist can be found by asking your doctor for a referral or looking on the American College of Medical Geneticists website. Genetic counselors can be found on the National Society of Genetic Counselors website.
Make sure your primary care physician has the appropriate information on adrenoleukodystrophy in order to ensure that you are receiving the proper medical management.