ISMRD’s Services

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.

The Penguin Cafe Discussion Forums

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.

Family Matching

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.

For additional information on these services, please refer to our dedicated web page on Pathways or on the Penguin Cafe discussion forum.

Disclaimer | Privacy Policy | Site Map | Contact Us | Accessibility

© 2009 ISMRD, a 501 (c)(3) not-for-profit organization, FEIN 52-2164838. All rights reserved