How do I find a center of excellence in Alpha-mannosidosis?
There are not centers of excellence specifically for Alpha-mannosidosis, but there are several centers of excellence in the United States and other countries for lysosomal storage disorders, including Alpha-mannosidosis. To find a doctor or center that specializes in metabolic genetic conditions or lysosomal storage disorders like Alpha-mannosidosis in the United States, you can access the list of centers compiled by the National Mucopolysaccharidosis Society by visiting http://mpssociety.org/treatments/resources/ and clicking the "MPS Genetic Centers" Link to download the corresponding Excel file. Another option to access this file is to directly go to http://mpssociety.org/wp-content/uploads/2016/03/Tertiary-Care-Centers.xlsx. Even though this list is on a website focused on Mucopolysaccharidoses, these doctors often specialize in many different types of lysosomal storage diseases, including Alpha-mannosidosis.
SOURCE: Emory University - Department of Human Genetics in collaboration with ThinkGenetic • https://www.thinkgenetic.com/diseases/mannosidosis-alpha-b-lysosomal/healthcare-doctors/9084 • DATE UPDATED: 2019-05-30