Patient, Parent, and Family Member Leadership Opportunity
The Midwest Genetics Network is currently recruiting individuals with a genetic condition as well as parents and other family members to join as stakeholders. This seven-state initiative focuses on improving access to genetic services, particularly for patients and families from underserved communities. Patient and family representatives can participate in virtual meetings in various focus areas, as well as our new dedicated Patient and Family Council. The Patient and Family Council is open to any individual with a genetic condition, parents and other family members from within the seven-state region.
The Midwest Genetics Network recognizes that individuals with genetic conditions and their family members bring an important and unique perspective to the work and are valued for their knowledge and experience. The Patient and Family Council offers an opportunity for patients, parents, and family representatives to connect with others, provide input on projects related to increasing access to genetic services, and develop resources and materials for individuals and families impacted by genetic conditions. Attached is a brief Position Description with more information as well.
Individuals are invited to join for an orientation meeting that will take place on August 27th from 2:00 – 3:30 pm (EST). The orientation will help interested patients, parents, and family representatives learn about the history of MGN, how their participation is needed, and ways they can be involved.
All meetings are done virtually thru Microsoft Teams (a meeting platform similar to Zoom). A computer and internet connection are needed, and a webcam is recommended. If necessary, you can also call in by phone, and many smart phones support the Teams app. There is a yearly in-person meeting, however this year’s meeting in late September will be conducted virtually due to the COVID-19 pandemic.
If you would like to learn more about this opportunity, email Kristen Reese kreese@mphi.org at Michigan Public Health Institute with your name, email, and contact phone number. Please indicate you are interested in joining the Midwest Genetics Network Welcome and Orientation meeting, and how you are connected to this work. We will send you an email with the meeting date, time and connection information.
If you are interested in learning more about Midwest Genetics Network before Aug 27th, you can visit our website at www.midwestgenetics.org or call Kristen Reese at 517.324.7396.
MGN Participation Description Updated 2020 by Family Voices Indiana on Scribd
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