4th International Scientific and Family Conference July 2015

All of us on the board of ISMRD are honored and excited to once again sponsor a combined scientific and family conference for glycoprotein diseases in July 2015. The conference, Glycoproteinoses: Fourth International Conference on Advances in Pathogenesis and Therapy will be held on July 23–26 2015 in St. Louis, Missouri, USA. More detailed information on the conference agenda and registration information will be coming soon. We would like to invite all interested families and investigators and industry to attend this conference. If you wish to be added to the mailing list please send us your details.

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.