ISMRD provides supportive services to families without requiring membership dues or added fees. These include:
Our periodical newsletter features stories of relevance to anyone affected by a Glycoprotein Storage Disease. It is available in print format via postal mail and as an Adobe Acrobat file. Acrobat is installed on most computers, but if you need the latest version download it from Adobe's website.
To download our latest newsletter, visit the Latest Newsletter page.
A means of exchanging information with others online about lives affected by a Glycoprotein Storage Disease. The Cafe is a series of topic forums specific to each diagnosis with discussions centering around a host of individual "threads," or subjects. For registered users there is the additional advantage of a private area for discussions of a more personal nature, as well as those concerning ISMRD's mission.
ISMRD provides a "buddy," or guide, to help new families navigate the news that a loved one has been diagnosed with a Glycoprotein Storage Disease. We can match a family to another family in a specific geographic location and to those who require help in French or Spanish. We hope to soon provide additional multi-language support, as well.
Family and Medical Conferences
ISMRD held its first international Family Conference near Washington, D.C. in April 2004 and a Family Workshop in Ann Arbor, Michigan in April 2005.