Michael Losow, a legacy RAM Member, 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.

 

Michael worked with multiple rare disease organizations to help identify and fill the unmet needs of the community. At RAM he held a pivotal role in the Adults Living Rare Initiative, always choosing to work on projects that aim to serve the best interests of the global rare disease community.

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Michael is now RAM's first Legacy Member. His passing on July 8, 2021, by an adult onset rare condition, has saddened all who has had the honor of working along side him on community-based projects. The the world didn't just loose a great man. The rare disease community lost a fellow activist, who's work has helped to pave the way for future community-based rare activists to stand united for access to therapeutic treatments that improve and save lives.  The rare disease community will never forget Michael's contributions to the rare disease landscape; and will miss him deeply.