4th International Scientific and Family Conference July 2015

All of us on the board of ISMRD are honored and excited to once again sponsor a combined scientific and family conference for glycoprotein diseases in July 2015. The conference, Glycoproteinoses: Fourth International Conference on Advances in Pathogenesis and Therapy will be held on July 23–26 2015 in St. Louis, Missouri, USA. More detailed information on the conference agenda and registration information will be coming soon. We would like to invite all interested families and investigators and industry to attend this conference. If you wish to be added to the mailing list please send us your details.

Resources

ISMRD BrochurePenguin

Our brochure can be downloaded here.

Penguin Cafe Discussion Forums

The Penguin Cafe Discussion Forums was developed back in 2004 so that families had a means of exchanging information about the lives of those affected by Glycoprotein Storage Diseases. The Cafe is a series of topic forums specific to each diagnosis with discussions centering around a host of individual “thread,” or subjects.

The Cafe has not been used for a number of years now as Facebook and Twitter have taken over; however there is a lot of useful information for those who want to go searching for it. ISMRD will be closing the posting option on the Cafe to read only.  If you have a question and want to know more please join us on our Facebook page.

Useful Links

We have gathered a number of external links that maybe useful for those searching for more information.

ISMRD has made a number of YouTube movies which can be viewed below.

Medical Papers

We have collected a number of medical papers that maybe of interest to those searching for information about their particular disease.

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.

The Longitudinal Studies of the Glycoproteinoses is currently recruiting patients. You can contact the Greenwood Genetic Centre directly or you can message ISMRD at info@ismrd.org.

ismrd children