Resources
ISMRD Resource Library
ISMRD has gathered useful resources to help families find the information they are seeking. We hope this brings ease and understanding in your journey.
ISMRD Brochure
Learn more about ISMRD, our history, and how we support families with Glycoprotein Storage Diseases.
U.S. Doctor Database
This is a simple tool offered to help you find a doctor who is familiar with Glycoprotein Storage Diseases. This is currently based on doctors located in the USA.
Family Stories
Looking to hear about others who have their own stories about their journey? ISMRD has compiled several stories from people affected with Glycoprotein Storage Diseases who wanted to share about their experiences. Some are written from the parent’s perspective, while others are written by the affected person.
Links
There are many links given to be a resource including topics of diagnostic, research, therapy, and books. The listings found under “links” are not to be construed as an endorsement of that site’s content by ISMRD and its Board of Directors.
Share Your Story
If you would like to share a story with your experience, please email info@ismrd.org
Newsletters
ISMRD Newsletters are available on this page.
YouTube Movies
The 2014 video was used for the Chase Foundation Grant and was updated 2014.
Natural History Study
In 2006 ISMRD and the Greenwood Genetic Centre began a partnership to develop and deliver the world’s first and only Natural History Study for Mucolipidosis. In 2012 at our Scientific/Family conference the study was expanded to include the other 8 diseases that we support.
