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ISMRD is an internationally focused nonprofit organization whose mission is to advocate for families and patients affected by one of the Glycoprotein Storage Diseases: Alpha-Mannosidosis, Aspartylglucosaminuria, Beta-Mannosidosis, Fucosidosis, Galactosialidosis, Mucolipidosis II (I-Cell Disease), Mucolipidosis III (Pseudo-Hurler Polydystrophy), Schindler Disease and Sialidosis. These diseases are the ultra-orphans of the Lysosomal Storage Disease family, which encompass over 40 similar disorders, and currently have few treatments beyond symptomatic care. ISMRD's advocacy efforts are not limited by borders, language, race or religion.

With the benefit of a crystal ball ISMRD's Board of Directors envisions a future where children are detected early, treated effectively and go on to live long, healthy and productive lives. In this new reality science, medicine and families will have collaborated to find cures where none exist today and the need for an organization such as ISMRD will no longer exist.

We invite you to utilize our website to learn more about these diseases and ISMRD's role in bringing our vision to reality. Please contact us if you wish to know more or want to contribute time or money to our cause.

 

Visit our online community discussion forum The Penguin Cafe


 

 

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