The European Patient Forum is happy to share with you an exciting opportunity for the 3rd edition of the Summer Training for Young Patients Advocates. The theme of 2019 is ‘Shaping the Future of Patient Advocacy’.

Over the course of four days, young people will be expanding their skills and maximize their leadership potential. The dedicated sessions will focus on topics such as representativeness, transparency, ethics and the importance of building trust. Patient advocacy may take different pathways, through individual patient advocates, emerging online patient communities and more formalised entities such as patient organisations. The Summer Training Course will look at how uniquely they can contribute to patient advocacy and do complement each other.

The training will take place on 7-10 July 2019, in Vienna Austria. Deadline for applications is 1st March 2019. EPF offers support of travel costs and accommodation.

For more information about the application process and deadlines:

Testimony from Penny Clapcott (in the front row to the right):

“Last year I was accepted onto a training programme with the European Patient Forum (EPF). Last year’s focus for the training course was based on becoming a better patient advocate and learning key campaign skills to promote your rare disease/health condition.

I applied because I have been on a patient forum for a big research project based in the UK called The RUDY study, which is an online based research project. I am interested in the key concept of ‘nothing about us without us’ campaign as I feel that is vital for OI. At the Brittle Bone Conference I was able to share a little bit about my experience and speak with other health professionals that what we want as patients is very different to what clinical trials aims to improve.

For the EPF course we attend a 5 day course in Vienna, Austria with incredible tutors and access to many other health professionals such as the European Medicine Agency staff member and head of the European Patient Forum CEO. We did a lot of practical work to develop our own campaigns which we then launched after the 5 days training. We were put into teams where we had monthly skype calls to check in with each other, discuss any barriers we’re facing with our campaigns and offer solutions and creative ideas to move forward individually and as a group.

I really felt it improved my confidence and broke what feels like a huge unrealistic end goal into much more manageable goals. My campaign was based on quality of life for people with OI. I want doctors and researchers to listen to us patients that we want to have a good quality of life and that isn’t always about reducing fractures, more often it’s about better pain management and strategies to help prevent and reduce fatigue. Since finishing the summer course I have been invited onto a medical research board as a patient within the Brittle Bone Society and still heavily involved with the RUDY study.

I highly recommend anyone who is interested in patient advocacy to apply for this year’s course. I promise that you’ll meet some great people from all backgrounds and health conditions. It was a great chance to learn from professionals as well as peers in a similar position to you.