ISMRD offers the following external sites for their potential usefullness in understanding Glycoprotein Storage Diseases. However, a listing here is not to be construed as an endorsement of that site’s content by ISMRD and its Board of Directors.

Caregiver Action Network

Caring for Rare Disease Caregivers: A helpful guide with lots of suggestions for family caregivers caring for loved ones with Rare Diseases.


Diagnostic Resources

Find diagnostic laboratories performing molecular and DNA analysis for establishing an initial diagnosis.

Directory-Search Sites

Specific Laboratories

Prenatal Testing

Sites that explain or perform prenatal testing.


Investigation of new therapeutic techniques for Glycoprotein Storage Diseases and their underlying causes has accelerated in this new millennium. The following sites may be explored for monitoring this activity’s impact on Glycoprotein Storage Diseases.

Biopharmaceutical Companies

Clinical Trials the National Institutes of Health’s index of clinical trials proposed, under way and terminated.

Organizations & Agencies


Current therapies for Glycoprotein Storage Diseases are primarily supportive or palliative in nature. However, bone marrow and cord blood transplantation have shown initial success for patients with Alpha-Mannosidosis and Fucosidosis. Enzyme Replacement Therapy is currently in phase III clinical trials for Alpha-Mannosidosis.

Bone Marrow & Cord Blood Transplants

Enzyme Replacement Therapy (ERT)