Report Community Conversation

The public forum was a unique opportunity to bring Australian family members and TRACK DCAA researchers together. It was the first time such an event was part of the international CAA conference and it was a huge success.

Instead of the researchers organizing something top-down, they asked family representatives to be responsible. Sanne from the patient assocation worked together with her colleague Maike and Aussie family members Dorinda, Dini and Carol to make the meeting informative for both parties.

We figured that it was most neccesary to give the researchers insight into the 'lived experience' and help family members understand what research exactly means and what the impact of enrolling has on all of our futures.

Therefore we askes groups of attendees to answer two questions: 1) If you think of a future treatment, what does it look like? and 2) What do you think are obstacles for family members to participate in research?

The results from all groups were very impressive and provided a huge opportunity to better research and enhance results. All the researchers agreed afterwards that this was the most important and lucrative part of the CAA conference. 

As family representatives, we were very positively suprised by the motivation and energy brought by all present family members. We are greatful for their efforts, since we know that it is hard to be confronted with the disease and its consequences.

Dorinda wrote a comprehensive report of the afternoon and its results. For anyone who is curious, you can find it here. 

A big thank you to everyone who participated!