Contact Information

Organisation
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

Patient Pledge

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!
0/1

Listen

  • 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
0/1

Co-create

  • 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
0/1

Communicate

  • 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