Welcome to the website of ISMRD -
The International Advocate for Glycoprotein Storage Diseases

Lamzede approved for Alpha-Mannosidosis in the US
Read the announcement from ISMRD Board
To enroll for Lamzede
JCR Pharmaceuticals has developed JR471, an ERT for Fucosidosis, which can cross the blood brain barrier in a mouse model.
Read the announcement from ISMRD Board
Watch the 20th Anniversary “History of ISMRD” 
ISMRD is an internationally focused not-for-profit organization whose mission is to advocate for families and patients affected by one of the following disorders.
• Alpha-Mannosidosis
• Aspartylglucosaminuria
• Beta-Mannosidosis
• Fucosidosis
• Galactosialidosis
• Sialidosis (Mucolipidosis I)
• Mucolipidosis II, II/III,  III alpha/beta
• Mucolipidosis III Gamma
• Schindler Disease
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.
We invite you to search our website to learn more about these diseases and ISMRD’s role in bringing our vision to reality. Please join us on Facebook

Newly Diagnosed?

Are you newly diagnosed? Find out more about your disease from our diseases information or hear about other families experiences from our family stories section.

Or maybe you would just like to talk with someone? Please contact us.

Join Us
Ready to be part of the ISMRD community? Join us on Facebook where you can link up with other families. You can also follow our activities in our newsletters, which we send out to our mailing list.