Mucolipidosis Research Initiative

Families affected by mucolipidosis are raising $100,000 by June 2016 to support significant research. Donate today so their children have hope of a brighter future.

Newsletter April 2016

Our latest newsletter can be found on the Newsletter page.

Rare Disease Day 2016

Join us in making the voices of rare disease heard.

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ISMRD accepted as a member organisation of NORD

ISMRD is proud to announce that we are now a member organization of NORD. As a member this allows us to become part of a large collective voice on behalf of patients with rare diseases.

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

ISMRD is an internationally focused not-for-proft 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 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 or follow us on Twitter.