As part of its strategic imperatives, one of the goals of the IGA is to have a better understanding of the impact of being diagnosed with a comorbidity such as Parkinson’s Disease or Multiple Myeloma. The long-term objective is to put into place a structure to support Gaucher patients and families who are dealing with comorbidities. Due to limited resources, the project will take a phased approach, concentrating first on Parkinson’s Disease and, a later stage, Multiple Myeloma.
Parkinson's, like Gaucher, is a multi-faceted disease which creates many additional challenges on patients/families' quality of life. While we are now more aware of such challenges for the Gaucher patient/family, we currently have little information concerning the people who struggle daily with both Gaucher and Parkinson's diseases We would therefore like to enlist your help in identifying patients/families who may be interested in inputting to this project.
If you do know of such people, please ask them to get in touch with Margaret Giuliani who is leading the project on behalf of the IGA via firstname.lastname@example.org