Newsletter March 2017

Our latest newsletter can be found on the Newsletter page.

Support ISMRD conference families ... Buy Great Gifts

For a limited time, ISMRD is offering 17 fun gift items for sale to offset expenses for families traveling to our 2017 Rome Conference.

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5th Glycoproteinoses International Conference

Are you ready to join us in Rome in November?

Some basic information is ready – either click the banner above or follow this link – and more will come as we confirm aspects of the conference.

We look forward to seeing you in Rome!

Mucolipidosis Research Grant Awarded

What exciting times!! ISMRD is pleased to announce it has awarded a grant for Gene Therapy Research for Mucolipidosis. Read more here.

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.