ISMRD understands the loneliness and uncertainty resulting from having a loved one affected by very rare diseases such as the ones for which we advocate. To lessen this sense of isolation we can provide a Family support contact to anyone impacted by a Glycoprotein Storage Disease. If you would like to be contacted by one of our contact parents, please email us with information about yourself, the person in your family that is affected and anything else that would help us direct you to the best person. Such communications will remain private unless you authorize us to make your presence known to others with a similar diagnosis.

If you do not mind discussing your loved one in a more open environment please visit our online Discussion Forum. the Penguin Cafe.