International Society for Mannosidosis & Related Diseases
ISMRD
Mannosidosis & Related Diseases
ISMRD is the leading advocate for families worldwide affected by a Glycoprotein Storage Disease. Through partnerships built with medicine, science and industry, we seek to detect and cure these diseases, and to provide a global network of support and information.
ISMRD was incorporated as the International Society for Mannosidosis & Related Diseases in Baltimore, Maryland, USA on March 10, 1999. Paul and Debora Murphy, parents of a child with Alpha-Mannosidosis, developed the organization to fill a void they perceived existed both for affected families and scientists and physicians with an interest in research and treatment modalities. ISMRD continues to seek a future in which children with Glycoprotein Storage Diseases can be detected early, treated effectively, and go on to live long, healthy and productive lives.
Like penguins in real life, our penguins show great adaptability to their harsh environment, manifested in the diseases that have afflicted their children. ISMRD’s penguins are learning to symbolically fly and overcome the disadvantages of genetics and the clinical symptoms that have ensued. Our penguins will eventually “fly” by finding treatments and cures for these diseases and, in the meantime, will find ways to support one another across nations and differences in language, religion and culture.
Supporting the mannosidosis and related diseases community
Mission
ISMRD is the leading advocate for families worldwide affected by a Glycoprotein Storage Disease.
Support
Glycoprotein and Related Storage Diseases are very rare, progressive, largely untreatable metabolic enzymatic defects inherited by children from both parents.
Research
ISMRD supports the research for these rare diseases.