Links

Journal of rare diseases: Medical overview of alpha-mannosidosis

ISMRD: The international society for mannosidosis and related diseases

Saffy’s Blog – A girl in England who underwant a BMT for alpha-mannosidosis in 2004

Dylan’s BMT – A boy in England who underwent a BMT for alpha-mannosidosis in 2009

The Formans – A family in New Zealand that we have been in contact with, who have two adult children with alpha-mannosidosis.  John Forman has been a great source of information and support for us.

Summary of 14 Bone Marrow Patients:
This is an excellent poster from Dr Mynarek in Germany, presented in May 2010 that describes 14 patients that have had a BMT for alpha-mannosidosis and the outcomes. It was very helpful for us to see the postitive outcomes for these few patients and helped us decide that it was worth it for us to pursue a BMT for Luke:
Mynarek Poster EBMT final