Theme of our congress
Theme of this years congress was We want to be at the table and not on the menu
Here you can watch all talks of our congress
For reference purposes: our Program Annual 2019
patients Advocate Hero of Cancer Awards 2019
We awarded Stephen Friend, Wanda de Kanter and Pauline Dekker with the Patient Advocate Hero of Cancer Award. The awards were given for their merits to put patients first.
- Presentation Annual Congress 2018 – Herman Otten
- Presentation Annual Congress 2018 – Herman Otten – Handout
Day 1 – 30 January 2019
After a warm welcome by our patient advocate Peter Kapitein and by our host the Dutch Central Bank we listened to a very impressive patient story by Jason van der Burgt. He showed us how important our fight against cancer is. We also had a very inspiring presentation by Teus Kappen (UMC Utrecht) & Tjebbe Tauber, patient advocate. War stories of a data scientist in healthcare .. ask the right questions, get the right data, and most importantly: work together. And we enjoyed the talk of Jan Kimpen of Philips about how the patient can benefit from the industry as enabler. Catering for the needs of patients is key. After that we enjoyed a lovely dinner with all participants.
Day 2 – 31 January 2019
Our lovely Patient Advocate Piarella welcomed us on the second day of our Annual Congress. Then Barbara Moss shared her patient story “Doctor, please get personal with me!”with us. Rob Pieters from the Princess Maxima Center talked about the importance of organizing innovative pediatric cancer care and research.
Our Patient Advocate Peter talked about how much we learned from Aids activists. Evidence alone is not enough, lobby is also important. Together we can make a difference. Stephen Friend spoke to us about navigating between health and disease, and how technology can help us!
In the Rapid Fire Talks some very powerful messages came across. Robert Greene is working on a solution to have food tasting better as a cancer patient himself. How food alteration can bring everyone to the table. Giliam Kuipers is developing MedGezel, to get patients help with listening, helping and learning. And have this done by future doctors. Margreet Balder tells about how she as a patients is now as a therapist making people aware of their inner strength and connect with their bodies.
Colin McGuckin wanted to be a cancer researchers since he was 14. After an interesting career he now prints skins for cosmetics to fund cancer research. But also prints tumors to screen the right therapy. Sandy Krijnen asked her own body what lifestyle she needs after not being able to walk anymore. She is working on building a lifestyle house to link treatments and therapy and help people get better.
Maureen Visscher tell how the story of her father being diagnosed with cancer resulted in a search for solutions. That’s how her family found out about surgery without incision. Pouya Zarchin ended the Rapid Fire talks and tells how he came to the Netherlands because they were not safe anymore in their own country.
In het afternoon we went out in the city and used the locations as an analogy and inspiration for our conversation on what is possible and what can be done.
Day 3 – 1 February 2019
Piarella kicks off the last day of our congress. We all had a moment of silence for all those patients advocates and all those other people that lost their fight to cancer. That’s why it’s so important to go on. Never ever quit!
We want our health and we want it now! was a great great talk from Natjaja Frank from the Medical University of Vienna. Human rights lawyer Jaykumar Menon from the Centre for International Sustainable Development Law talked to us about open source pharma and addressing the problem of low-revenue diseases. Affordable medicines for all!
Patient advocate Herman kicked off our working sessions. We want to have a solid basis for our lobby agenda and we worked on 4 topics together with all participants. Those topics were prevention, diagnostics, treatments, and aftercare. We will work on the great outcome of the working session.