When people ask where I should be treated now that I have been diagnosed with amyloidosis; I always tell them they have overcome the biggest hurdle. As in any rare disease that would be getting an accurate diagnosis. But with the many different types of amyloidosis(AL, AA, ATTR, CAA, SAA, Localized and more) one has to weigh convenience with the question of where to go for accuracy of diagnosis and treatment. There are TWO major centers of excellence with others on the horizon.
Boston University Amyloid Research and Mayo Clinic/ Rochester New York (both on our website www.amyloidosissupport.com). Both require a 3 to 5 day visit for a second opinion that is approved by most insurance companies and Medicare. Then after one is properly typed and a medical protocol is developed by the wonderful medical groups one can go to a "convenient place" near home and Boston or Mayo will work with your local doctors. For names of local doctors that know amyloidosis (they are few and far between) please e-mail firstname.lastname@example.org.
Good Luck on your journey and we will try to help you.
AMYLOIDOSIS SUPPORT GROUPS
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"Don't Take Your Organs, To Heaven, Heaven Knows We Need Them Here"