Gofundme - Fundraiser

ISMRD has started another fundraiser through gofundme. We hope to be able to raise $70,000 which will help support the Natural History Study thus ensuring that new families are able to participate in the study.

To make this fundraiser work we are asking our families and those searching our website to share the link via your social media links such as Facebook and Twitter.

Please use the link above to go to our gofundme page where donations can be made and you can meet some of our very special people.

Rare Disease Day 2014Rare Disease Day

This years Theme and Slogan are: Join Together for Better Care.

Rare disease day 2014 puts the spotlight on “Care”. To bring attention to the many aspects of care for people living with a rare disease.

We encourage ISMRD families to join together for better care. Check out our new pages about Rare Disease Day and how you can participate.

ISMRD 2014 Calender - Fundraiser.

ISMRD calender 2014ISMRD’s calendar featuring many of our special children and adults is now available to purchase. (View a PDF preview.) If you would like to order some, please contact Susan Kester. The calendar costs $12.00 US and payment can be made by either cheque made out to ISMRD and posted to Susan at 1640 Lake Ave, Fort Myers, Fl, 33901 or by using our Paypal facility.

Funds raised from the sale of the calender will go towards some of our projects such as:

  • Natural History Study
  • 2015 International Scientific/Family Conference
  • Scholarships to support young investigators attend the WORLD symposiums

For more information please contact Susan Kester.


ISMRD is an internationally focused nonprofit organization whose mission is to advocate for families and patients affected by one of the Glycoprotein Storage Diseases: Alpha-Mannosidosis, Aspartylglucosaminuria, Beta-Mannosidosis, Fucosidosis, Galactosialidosis, Mucolipidosis II (I-Cell Disease), Mucolipidosis III (Pseudo-Hurler Polydystrophy), Schindler Disease and Sialidosis. These diseases are the ultra-orphans of the Lysosomal Storage Disease family, which encompass over 40 similar disorders, and currently have few treatments beyond symptomatic care. ISMRD's advocacy efforts are not limited by borders, language, race or religion.

With the benefit of a crystal ball ISMRD’s Board of Directors envisions a future where children are detected early, treated effectively and go on to live long, healthy and productive lives. In this new reality science, medicine and families will have collaborated to find cures where none exist today and the need for an organization such as ISMRD will no longer exist.

We invite you to utilize our website to learn more about these diseases and ISMRD's role in bringing our vision to reality. Please contact us if you wish to know more or want to contribute time or money to our cause. Or download our brochure (PDF).

Visit our online community discussion forum The Penguin Cafe, join us on Facebook or follow us on Twitter.

Illustration for contributions to the ISMRD.

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