Rare Awareness Radio

By: Rare Awareness Radio
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  • Summary

  • Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
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Episodes
  • EP 1 Mike Michaelis

    EP 1 Mike Michaelis
    Oct 8 2024
    Mike Michaelis is the founder and president of The OMSLife Foundation. His passion for OMAS began in 2009 when his oldest granddaughter, Alexa, was diagnosed with OMAS. Since then, his focus has been to build a worldwide support network for patients and caregivers, raise awareness of OMAS, and raise funds for research. Mike is a retired IT executive for a Fortune 500 company, and he started his own company in business process and project management. Mike’s credentials also include the development of the OMS Patient Reported Natural History Study. This collection of fifteen surveys was funded via a grant from NORD and the FDA. At present, they have over 380 contributors to the registry. However, Mike’s passion continues to connect patients with the best care providers available. He has been fortunate to meet over 200 OMAS patients and their families, dozens of OMAS specialists and researchers worldwide. For more information, please visit https://omslifefoundation.org/
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    47 mins

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