Where patients, loved ones, physicians, and researchers gathered to learn from and be inspired by one another
Date: September 1-3, 2024
Venue: Altis Grand Hotel Lisbon, Rua Castilho, 11, 1269-072, Lisbon, Portugal
Click here for a pdf of the program book.
What a fantastic time we had in Lisbon, Portugal, from September 1-3, as we connected with old friends, made new ones, and were inspired by our amazing PC community. One attendee expressed it best: “There was so much love!”
Thanks to the experts, helpers, family members, and most of all, the patients who came together for presentations, group discussions, physician evaluations, and shared the best ways to navigate life successfully with a painful, rare disease. We all learned firsthand that we are not alone.
We were especially impressed by adults helping young adults, and then teenagers helping children. It was heartwarming to see multilingual attendees translating for others who spoke Spanish, French, and German. We truly have a community full of giving people.
In addition to the regular patient support meeting schedule, some of our patients and physicians participated in a unique project sponsored by Kamari Pharma. The project aims to develop a tool for clinicians to assess PC severity in patients, with the goal of improving future clinical trials for PC therapeutics.
This was the first time our PC patients had gathered together for a full fledged European patient conference since the 2018 London meeting and we can hardly wait until the next time we meet!
Thank you to PCer and event planner Jenny Hart for her professional help with our meeting and for our sponsors, Ten Bio and Kamari Pharma.
We asked our attendees: What would you say to someone who just found out they had PC and is nervous about attending a patient support meeting?
- That it is your second family.
- Das es das Beste ist was man machen kann und überhaupt nicht nervös sein muss, da man herzlich empfangen wird. Und das die beste Möglichkeit ist über PC etwas zu erfahren um die Krankheit zu verstehen und man tatsächlich nicht allein ist.
(That it is the best thing you can do and you don’t have to be nervous at all because you will be warmly welcomed. And that the best way is to find out something via PC in order to understand the disease and you are actually not alone.) - It will be the best thing you can do for yourself. You will learn about your condition as well as the best ways to deal with the pain. And you will meet other people dealing with the same condition as you.
- PC meetings are a place for sharing; everyone cares for one another, and they give power, strength, and hope for the future. You are not apart! Come and see that you can learn, meet others, have fun, and be in touch with the state of the arts about PC and genetic mutation!
- Extract good feelings and positive aspects from PC, not only pain and isolation. Do it! You will come away inspired/feeling supported and not alone if you come.
- To join a PC’ers association, go to the discussion sites dedicated to it. No reason to be afraid. The meeting is intended to help you understand and give helpful tips.
- Go for it. The most important part of the meeting is socializing with other PCers outside of the formal schedule. Emphasize that this will open be the best experience to understand what they have and options for management and family decisions.
- PC patients are a family that understand you because they have been through the same problems Come along and listen to others, no need to fully participate. Many of us have years of living with the condition and have learnt to adapt our lifestyle around it. The more people who get involved in the project the better chance of a ‘cure’. I would encourage him or her since it is a way to meet other people who suffer the same thing as you and so you feel understood and not alone.
