“It has been almost like meeting members of my own family that I´ve just never met before.”
This comment from one of the young adults attending the first ever FIN Young Adults Meeting is very telling indeed. Sharing a rare diagnosis is a combining factor that quickly overcomes things like nationalities or even language barriers.
The FIN young adults meeting was organized in Barcelona, Spain on 16-18 of June this year. There were 21 young adults from around the world attending the meeting along with Anna and Charlotte from FIN who are working as co-mentors of the young adults program. We also had excellent visitor speakers attending the meeting. The first day started, after introductions of course, with 2 brave young men, Wojciech Nadolski from Poland and Thomas Yucheng Lim from Taiwan sharing their life stories and personal experiences with Fabry disease. Dr. Nadia Ali from the US was there to talk about mental health and adulting with Fabry disease. She also held a workshop on the first day on mental health issues while Anna ran a different workshop simultaneously on medical gaslighting. The first day ended with what proved to be the most popular activity of the weekend: a Spanish cooking class. We were all thrilled to learn how to make gazpacho, paella and other Spanish delicacies while having loads of fun at the same time.
To start the second day Anna lead a group session about what finding your tribe means in a rare disease framework and what the benefits of peer support can be. We also welcomed a guest speaker from Spain when Concha Mayo joined us to talk about self-awareness and storytelling as a tool in patient advocacy. Concha is a professional speaker who is also involved in running the Eurordis leadership academy. She gave us some wonderful insights on personal development and storytelling. On the second day we also organized a groupwork session were the participants discussed different topics from everyday life with Fabry disease to family relations, work and even travel. Lots of in-depth discussions took place and many great tips were shared.
The final day started with Anna talking about the basics of patient advocacy and what the different roles and possibilities are in patient advocacy. Some but understandably not all young adults are very interested in becoming active patient advocates in the future (and some already are) so talking about how to proceed to gain more experience was beneficial. Our guest speaker on the final day was Alba Parejo, a young Spanish woman with a rare skin condition. Alba talked to us about empowerment, resilience and self love in the context of having a rare disease. She also organized group work to give the participants a chance to touch upon these important topics together.
At the end of the third day it was time to say goodbye. I think all of us participating were surprised by all the emotion and closeness in the room, created by only a few days together in sunny Barcelona. All of us left the hotel that day with many new friends and wearing similar panda socks. Panda was chosen to represent the group because pandas, like Fabry patients, are very rare and special creatures after all.
FIN is very proud of this initiative and was pleased to receive so many positive feedback from the group. The impact this weekend made was – according to the group – so powerful and very much needed. It was even said that for some this was the best meeting they attended. This goes to show how important it is for peers to be able to meet and exchange experiences.
