MEET US IN ST LOUIS, MISSOURI, USA - JULY 23 - 26TH 2015

Our conference pages for the Glycoproteinoses: Fourth International Conference on Advances in Pathogenesis and Therapy are now available. If you wish to be added to the mailing list for up dates please send us your details. Registrations for accommodation and the conference open January 2015.

Newsletter April 2014

Our latest newsletter can be found here.

GoFundMe – Fundraiser

ISMRD has started a fundraiser through GoFundMe to raise $70,000 to support the Natural History Study to ensure that new families are able to participate in the study.

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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
  • Mucolipidosis I (Sialidosis)
  • Mucolipidosis II alpha/beta (I-Cell Disease)
  • Mucolipidosis III alpha/beta (Pseudo-Hurler Polydystrophy)
  • 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.