|About||Activist in Patient Advocacy, Health Policy and Social Media. Key expertise in setting up NGOs. Prior professional experience in business development, mobile media and disruptive technologies. Specialties: Just making it happen! Patient advocacy, founding NGOs, business modelling, opportunity creation, project management, strategy development, technology assessment|
Individual pledge to Patients is a demonstration unifying the whole research community with the same approach of a personal commitment to work with patients for patients. Taking the Pledge to Patients means looking at your everyday activities and asking, “is the patient perspective clearly addressed in everything that I do?” Taking the Pledge to Patients means committing to simple, measurable and sustainable patient-centred principles, that will lead to better and more meaningful patient and healthcare outcomes.
Making a Pledge to Patients involves commitment to 3 guiding principles: listening to patients, co-creating strategies and solutions with patients, and communicating openly and clearly with patients. Are you ready to commit?Yes, I commit!
I have been running our online platform for German-speaking leukemia patients for more than 14 years, and have helped to found and grow the CML Advocates Network for more than 10 years. I am supporting CML patients on a daily basis. This keeps me close to the real need of real patients, over and above being a cancer survivor myself now for 16 years...Work in progress
I am committed to facilitate patient engagement in R&D by increasing the "system readiness" in patient organisations, academic groups and pharma to involve patient experts in a meaningful way.Work in progress
I am involved in a number of educational activities and networks that work on patient information and patient empowerment, including EUPATI, PFMD, EURORDIS, Leukaemie-Online, CML Advocates Network, Acute Leukemia Advocates Network, WECAN and many more.Work in progress