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Patient/Parent Outreach is Key to Advocacy
I represent Mississippi Metabolics Foundation, a Global Genes Foundation Alliance Member, and am working on my first outreach project to newly diagnosed families. Our Foundation is putting together patient resource bags to educate and support parents during these beginning days of caring for their child and coping with a rare disease diagnosis. These patient resource bags will be handed out at the Children’s Hospital by the Genetics Team upon diagnosis/positive newborn screen to assist families in getting the help needed to battle this new diagnosis with confidence. We will be creating insulated cooler bags to include information about state and federal assistance and rare disease support organizations for newly diagnosed families to have the information necessary to find support when needed. We also will include several items in the bags that metabolic families need to have on hand immediately following the diagnosis; examples include gram scale, measuring cups/spoons for weighing and measuring food, mixing container for metabolic formula, medicine syringes and droppers, masks, notebook and pen, hand sanitizer, etc. Also, we will include a resource folder with a welcome letter, resource lists, emergency preparedness info, brochure, business card, Global Genes Rare Disease Day ribbon, and any other organizational brochures or marketing available. Newly diagnosed families are given this diagnosis shortly after birth and then struggle to find resources, support, and assistance for raising a complex medical child. I want to create a resource bag with everything they need to begin this journey with less anxiety and worry about what to do next. They will have the information at their fingertips and be able to reach out to our organization for any questions and help needed. We are a statewide organization and support 50 plus rare genetic metabolic disorders. 100-200 newly diagnosed babies and children every year need support for this medical journey.

Sep 21, 2021 01:00 PM in Eastern Time (US and Canada)

Meeting is over, you can not register now. If you have any questions, please contact Meeting host: Sharon Terry - Genetic Alliance (she, her, hers).