For more than 20 years, I have worked as a writer and provided editorial support and guidance and strategic consultation to medical nonprofits and pharmaceutical and biotechnology companies. I have extensive experience writing about rare disorders for both patients (in lay terminology) and physicians (in medical terminology). At one time, I oversaw the development and expansion of the National Organization for Rare Disorder’s Rare Disease Database. I understand the unique needs of patients in the rare disease community and work to foster better communication and understanding between these diverse groups and the industry representatives that work with them. My projects have included helping to start and guide a nonprofit organization, running a competitive grants program, and creating the content and format for a lecture series on rare disorders and identifying and engaing the physician experts. Professional Patient Advocates in Life Sciences (PPALS) I am part of the founding faculty for PPALS and work to build recognition of this vital role in life sciences and to foster better relationships between PAO leadership and the Patient Advocacy professionals who serve them. WHY RARE DISEASES? There are over 7,000 rare diseases. Many are genetic, many affect children. Most of these disorders do not have an FDA-approved treatment. I realized that my efforts could make a difference - however small - in a community that has been long ignored.