Content - SAKK Patient Advisory Board

SAKK Patient Advisory Board

SAKK partnership with patients, patient representatives and patient organizations

Patient orientation is one of the SAKK's core values. We attach great importance to learning about the experience of patients and their families as a way of achieving improved long-term cancer treatments. Our patient advisory board supports the SAKK by advising it on research projects, communications or strategic affairs. Would you like to be involved? Please contact us with the provided contact form.

  • Event: Breast cancer diagnosis – the latest research news

    On 29 June 2017, the patient representative board of the Swiss Group for Clinical Cancer Research (SAKK) held a public event at the Marriott Hotel in Zurich on the subject of breast cancer research.  

    The first ever event attracted a great deal of interest. Around 50 visitors, people affected directly and relatives took the opportunity to gain an insight into the latest developments in clinical cancer research from a number of speakers. Dr. PD. Thomas Ruhstaller gave an introduction to the issue. Based on the questions asked by the audience, it quickly became apparent that the listeners were in no way laypersons. Before asking their question, some of the women there mentioned that they were directly affected by the disease. They thus asked specific questions about their treatment and the course of their disease. For example, why can a relapse occur after a mastectomy when the entire tumour had been surgically removed? And why does hormone therapy for the treatment of breast cancer only work initially, before the tumour suddenly loses its hormone dependence? Dr. Ruhstaller answered these questions – some of which were rather complex – precisely and professionally.  

    The following speeches by Professors Rochlitz and Miklos Pless provided details on the current status of the different cancer treatments and their prospects for success. Prof. Rochlitz reported in more detail about the advantages and disadvantages of personalized medicine, while Prof. Pless talked about the hype surrounding immunotherapy, which so far has unfortunately provided very little benefit in the treatment of breast cancer. The problem is that it is mainly those types of tumours that have many mutations – and that the body therefore recognizes as foreign – which respond to immunotherapy (e.g. lung tumours, melanomas). Breast cancer does not usually have many mutations, which is why boosting the body’s own immune system only minimally improves the chances of a cure.  

    In the last speech, Dr. Karin Ribi presented a programme in which individuals affected are coached/trained by other patients so that they can learn to take an active role in managing their own – often chronic – illnesses. This was followed by refreshments and an opportunity for the visitors to actively discuss the issues among themselves and with the experts.  

    The patient representative board plans to hold its next event at the semi-annual meeting in November 2017.

Members of the Patient Advisory Board

Dr Sander Botter

Sander Botter, PhD

Scientist in the field of musculoskeletal disorders (MSDs), representative of the patient organization "Swiss Sarcoma"

sarkom-schweiz.ch

Dr Silvia Ess

Silvia Ess, MD

Medical doctor and scientific collaborator in the cancer registry of St.Gallen/Appenzell

 

 

Dr Ursula Ganz-Blättler

Ursula Ganz-Blättler, PhD

Breast cancer survivor and committed activist regarding all things CrF (=Cancer related Fatigue)

Helga Meier

Helga Meier Schnorf

Member of the board of the association for the support of GIST (Gastrointestinal Stromal Tumor) affected patients in Switzerland

gist.ch

“I want to try to bring the patients closer to SAKK”

Rosmarie Pfau

Rosmarie Pfau

President of the Swiss Patient Organization for those affected by Lymphoma and their relatives ho/noho

lymphome.ch

"As a patient and a patient representative I would like to contribute and support SAKK in an advisory capacity by putting across the patient’s point of view."