ISMRD Submits to UK Medicine Evaluation for treatment for Alpha Mannosidosis

We are concerned by their plan to decline funding. Read more.

Rare Disease Epidemiology - 2nd Edition

Preface written by John Forman.

To learn more about the preface he has written, click here,

Newsletter December 2017

Our latest newsletter can be found on the Newsletter page.

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 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 or follow us on Twitter.