ISMRD provides supportive services to families without requiring membership dues or added fees.
Communication from ISMRD is done via a mailing list. We also keep a database of affected families. If you would like to join the mailing list (or add/change your contact details) or contribute your details to our database, please follow this link.
ISMRD provides a “buddy” or guide, to help new families navigate the news that a loved on 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 with French or Spanish.