Welcome to ISMRD’s new website!

Website upgrade was generously sponsored by Chiesi Global Rare Diseases!

The International Society for Mannosidosis & Related Diseases

Welcome!

ISMRD is an internationally focused not-for-profit organization whose mission is to advocate for families and patients. We are The International Advocate for Glycoprotein Storage Diseases.

Save the Date: Our 2025 Conference is Aug 7 – 10, 2025

Connect

ISMRD is the leading advocate for families worldwide affected by a Glycoprotein Storage Disease. Connect with other parents, patients, and families.

Learn

ISMRD has gathered useful resources to help families find the information they are seeking: access our Resource Library. 

 

Support

We invite you to join in partnering with ISMRD’s efforts of being able to detect Glycoprotein Storage Diseases early, treated effectively, and go on to live long, healthy and productive lives.

ISMRD began with Taryn. Find out more.

Celebrating our 25th Anniversary in 2024!

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?

Find Support

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.

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Join our Community

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.

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Our Partners & Associations