Apr
30

The Rare Disease Community in Minnesota: Finding and Caring for the Zebras

Hosted By: Pediatric Care Coordination: Community of Practice (PCC CoP)

Free to attend

Erica Barnes (she/her) - Ms. Barnes is the Executive Director of the MN Rare Disease Advisory Council, a Minnesota state agency which was created in 2019 following grassroots efforts by a cross-sector coalition of advocates. She has over a decade of advocacy and non-profit leadership experience, having co-founded with her husband Chloe’s Fight Rare Disease Foundation in honor of her late daughter. Ms. Barnes has a number of committee roles related to rare diseases. She chairs the NIH funded Global Leukodystrophy Initiative Clinical Trials Network patient advocacy consortium, is a work group member of the Sickle Cell Data Collection (SCDC) Program and is a coalition leader of CureMLD

Objectives:

  • Learn about the features of the rare disease community

  • Identify priority areas of focus to improve care

  • Be given tools and resources for meeting the needs of the community

Register here

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