May is the month for MPS awareness!

May is the month for MPS awareness!

Every year May 15 is observed internationally, to raise awareness against mucopolysaccharidoses (MPS). MPS are rare genetic disorders in children and adults caused by the absence of a specific enzyme. There are 7 types of MPS. It is estimated that 1 in every 25,000...
2021 National Family Conference and Gala

2021 National Family Conference and Gala

Our bi-annual conferences give families affected by MPS & related diseases an opportunity to learn about new research, treatment and care, and to share information and experiences with other affected individuals and families. The event was enjoyed virtually on...
Christina Gentle at the 2018 RARE Gala

Christina Gentle at the 2018 RARE Gala

Written and presented by Christina Gentle at the 2018 RARE Gala “Hi everyone, thanks for being here tonight. I’m Christina, Jessica Gentle’s sister. If you were at the Gala last year you might remember the great speech she gave about what it’s like to live with...