Our brochure can be downloaded here.
Search the ISMRD Database for Specialists experienced with rare diseases (US Only)
Connect with other families who have children with these rare diseases
We have gathered a number of external links that maybe useful for those searching for more information.
ISMRD Newsletters are available on this page
YouTube movies from ISRMD can be viewed below
- Michigan 2007
- conference 2012
- Video 2014 (This 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.