Last weekend the Myrovlytis Trust attended the 1st International Conference for Organizations Representing Patients with Kidney Cancer in Frankfurt, Germany.
The meeting, organised by the International Kidney Cancer Coalition, brought together a global community of patient advocacy groups, cancer survivors, clinicians and researchers to discuss how best to support individuals effected by kidney cancer.
Overall the meeting was extremely well organised and had a very interesting program. All who attended were enthusiastic and very passionate about the future of kidney cancer patients. It was great to share best practices with similar organisations and to learn how to best use the patient voice to influence clinical research at the earliest stages of design. I’d always thought that the clinical trial design and recruitment process was a rigid one and not up for debate, but now we know that an organised patient ‘voice’ will be listened to by pharmaceutical industries, or infact, that advocacy groups are willingly consulted by pharma to ensure that study design and patient recruitment is the best it can be.
The current state of therapies available to kidney cancer patients was also discussed. One topic that came up concerned the fact that most of these therapies slow down cancer progression by targetting pathways that aid tumour growth (i.e. VEGF as an anti-angiogenic target), instead of actually ‘killing’ the tumour cell itself. In relation to BHD Syndrome, I found this interesting since the majority of BHD research being carried out concerns identifying the pathogenic mechanisms that underly the disease itself, and by profiling BHD Syndrome at a molecular and biochemical level, I feel researchers will uncover drug targets that will help treat the disease and not slow down the symptoms.
To finish, I would like to commend the IKCC Steering Committee on producing an excellent meeting and to all those who attended for making the weekend a success…stay in touch!
www.bhdsyndrome.org – the pimary online resource for anyone interested in BHD Syndrome.