Bringing Patients and the Life Science Industry Together: Patient Advocacy +

Bringing patients and the life science industry together: Patient Advocacy + By Robert Schultz “Progress is personal,” according to Bob Coughlin, President and CEO of the Massachusetts Biotechnology Council (MassBio) and the father of a graduating high school senior with cystic fibrosis (CF). Coughlin’s keynote opened a unique virtual event called Patient Advocacy +, organized by swissnex Boston in partnership with Inspire. Patient Advocacy + was a perfect example of why Switzerland opened swissnex Boston in 2000 in Cambridge, Massachusetts. swissnex Boston is Switzerland's first hub of science and innovation and, as such, a pioneer in intellectual [...]

Listen to People Impacted by Rare Disease

Listen to People Impacted by Rare Disease By Kathleen D. Hoffman, PhD “The success (or failure) of the majority of rare disease drug development programmes rests on surrogate outcomes (e.g. laboratory measures, organ size) that may not reflect treatment benefits that patients value.”1 ~Morel and Canto Thomas Morel and Stefan Canto’s position paper from 2017 clearly describes the dilemma faced in rare disease research. Lab measures and organ size don’t speak to what patients with rare diseases experience, need or value. This focus on measures that are not meaningful impacts the development of rare disease treatments [...]