By Deb Burrows, BS, MA, EMTP
Like-minded people who serve people with rare diseases got together to chat during Industry Partner Panel: What to Expect in 2022. The Value-Based Chronic Disease Collaborative is supported by many nonprofits, including NHF, and two of the speaker’s organizations. The group shares dialog in order to serve members of all stakeholders better.
Jane Cavanaugh Smith, head, US public affairs and patient advocacy for Sanofi, introduced Beverley Francis-Gibson, MA, president and CEO of the Sickle Cell Disease Association of America (SCDAA).
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By Sandy Smith
It’s a circular relationship: Research impacts the lives of those who are affected by the issue being researched. And in the best scenarios, their experience influences the research, whether by topic studied or impact.
Participating in a research project can not only affect the participants, but also potentially alter the course of humanity. That might seem hyperbole, but Maria E. Santaella, RN-BC, MSN, CPHON®, a research nurse specialist with the National Hemophilia Foundation, began her presentation discussing a world in which kids could not play, much less play sports. Or where the life expectancy of a population was half that of others.
