Michael losow

Michael Losow began working with the rare disease community in 1984 partnering on the Orphan Drug Act with NORD while at the National Multiple Sclerosis Society. He continued working both with rare disease umbrella organizations as well as individual rare disease organizations when serving as the Director of Outreach and Alliance Development at the Biotechnology Innovation Organization, promoting opportunities to build organizational capacity, expand rare disease research and enhance public policy priorities that would improve the lives of people with rare conditions. After BIO, Michael led public policy and state government affairs for two biopharmaceutical companies with products and pipelines for rare diseases. While at Talecris Biotherapeutics, he took a lead role in coalitions to promote newborn screening for rare diseases. In addition to his regular employment, Michael has been a promoter of venture philanthropy, bringing this form of capital to the awareness of the biotechnology industry through sessions at major BIO conventions as well as holding a Southeast Regional Conference on Venture Philanthropy held in Research Triangle Park, NC where he brought in 50 rare disease venture philanthropy organizations to provide access and awareness to the biotechnology companies in Florida, Georgia, North Carolina, South Carolina and Virginia. In his most recent position as Director of Patient & Professional Advocacy at another rare-disease focused biotechnology company, Michael worked with multiple rare disease organizations to help them identify and fill unmet needs of the community, as well as continued his public policy activities to promote newborn screening and other issues of priority to the rare disease community.

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Areas of Advocacy Expertise:

  • Nonprofit Organization

  • Fundraising

  • Board Management

  • Story Telling

  • Advocacy Partnerships outside of disease-specific community

  • Whitepaper Development

  • Public Speaking

  • Legislation/Lobbying 

  • Pharma/Biotech Advocacy

  • LinkedIn - White Circle

The Rare Advocacy Movement (RAM) is a novel rare disease community-based advocacy network designed to address the issues that affect the real world people of the rare disease community.  RAM is the only community-based Center of Insight and Collaboration Zone offering rare disease stakeholders authentic, comprehensive real world insights, from the source. Each RAM member has made a public vow to always act in the best interest of the rare disease community by abiding by the Code of Conduct for Membership. Those who violate the Code of Conduct for Membership risk removal from the RAM membership and access to the global network via majority vote.