Our conference pages for the Glycoproteinoses: Fourth International Conference on Advances in Pathogenesis and Therapy are now available. Follow the links below to register for the conference and to book your accommodation.


ISMRD BrochurePenguin

Our brochure can be downloaded here.

Penguin Cafe Discussion Forums

The Penguin Cafe Discussion Forums was developed back in 2004 so that families had a means of exchanging information about the lives of those affected by Glycoprotein Storage Diseases. The Cafe is a series of topic forums specific to each diagnosis with discussions centering around a host of individual “thread,” or subjects.

The Cafe has not been used for a number of years now as Facebook and Twitter have taken over; however there is a lot of useful information for those who want to go searching for it. ISMRD will be closing the posting option on the Cafe to read only.  If you have a question and want to know more please join us on our Facebook page.

Useful Links

We have gathered a number of external links that maybe useful for those searching for more information.

ISMRD has made a number of YouTube movies which can be viewed below.

Medical Papers

We have collected a number of medical papers that maybe of interest to those searching for information about their particular disease.

Natural History Study

In 2006 ISMRD and the Greenwood Genetic Centre began a partnership to develop and deliver the world’s first and only Natural History Study for Mucolipidosis. In 2012 at our Scientific/Family conference the study was expanded to include the other 8 diseases that we support.

The Longitudinal Studies of the Glycoproteinoses is currently recruiting patients. You can contact the Greenwood Genetic Centre directly or you can message ISMRD at

ismrd children