The Voice of the Patient Summit
We were extremely honoured to be asked to take part in this internally focused event in Boston, Massachusetts by the Takeda Global Patient Advocacy team.
As one of four patient advocacy organisations attending, the day started with a 5 minute filming session where Matt responded to the following questions.
- What are the most significant unmet needs for people living with NT1? If one priority were addressed first, which would create the biggest near-term impact and why?
- What message would you like to share with Takeda’s leaders and teams working in NT1—and what concrete action from us would show that we truly heard you?
You can find out more about the other conditions and who represented them by clicking on the links below.
IFPA (International Federation of Psoriasis Associations Raquel Vaz, Scientific Project Lead
Platelet Disorder Support Association Caroline Kruse, President and CEO
Global Allergy & Airways Patient Platform Victor Gascon Moreno, VP of Awareness and Operations
This was followed by two 1 hour panel interview sessions consisting of senior Takeda staff & patient organisation leaders.
One Takeda: Research & Development and Patient Partnerships
The role of Patient Advocacy organisations , Data and Improving Outcomes, and Access to Medicine in a Changing Landscape
All patient representatives were then taken to a lab within the building and after donning PPE, were given a tour of onsite lab facilities where they were introduced to Flow Cytometry capabilities, Incucyte live cell imaging & cell culture, microscopy & Matt, enjoyed the dressing up, was extremely close to falling asleep in the “dark room” & almost landed a new job for himself in the wet lab and pipetting clinic!
.The final session was a deeper dive into each of the patient group areas with Matt joining a discussion with senior Takeda leaders from their Global Medical Unit & Global Evidence & Outcomes teams.
Narcolepsy: Roadblocks to Diagnosis & Care
- The burden of disease beyond sleep
- Path to diagnosis challenges
- The need for education & innovation in Narcolepsy treatment
