Your DCAA advocate

I was born and raised in Katwijk in the Netherlands, but have felt like Australia was my second home since my first visit in 2013/2014.

My parents started the DCAA patient Association in 2007 and I have been involved ever since. Because of my work as a patient advocate, I work closely together with the research teams in the Netherlands, Boston and Perth, and with pharmaceutical company Alnylam.

My mum carries the DCAA gene and is a patient. Personally, I have not been tested for the gene, but do carry a 50% chance. Because of this, I know from up close what it’s like. In addition, I am a psychologist and know everything about the impact of the disease on people’s lives.

Therefore, I like to act as a liaision between DCAA family members who participate in research or are thinking of enrolling, and researchers. If you have any questions, or would like to speak to someone who understand your potential obstacles before signing up, I am here. And remember: there are no stupid questions.

I am happy you are here on the website and getting informed. Maybe it will give you hope: how amazing is it that we are working together towards a treatment for Dutchtype CAA? We really are stronger together.

With warm regards,
Sanne