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.
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.
- Michigan 2007
- ISMRD conference 2012
- ISMRD Video 2014 (This video was used for the Chase foundation grant and was updated 2014)
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.