Tom McMillan (Chair) attends EUPFF Patient Advocacy Forum in Frankfurt in April 2025.
This was the first EU-PFF Patient Advocacy event in Europe, with representatives from all around Europe meeting for 4 intense days of training and networking.
I was fortunate to be part of to an extremely informative and educational four days, mixing with some of Europe’s top respiratory professionals and advocates.
Prior to attending the event the EU-PFF had asked me to speak about the work of PFNI.
I was one of three patient advocates to be asked (Switzerland, Italy then Northern Ireland); a very proud moment for me to give a presentation about the work of PFNI (My Slides Below).
The audience were very impressed with the all the services we provide to patients and their families.
There is only one other charity providing respite in Europe. However, we are the only charity in Europe and beyond providing Respite in two locations.
They were also very impressed with our handout booklets, fans, well being trips, advocacy, ambassadors, etc; and children’s book (Pete the Puffling’s Brave Adventure).
We have now been invited to become full member of the EU-PFF and this will happen in July this year.
The next EU-PFF event will take place in Prague 2026 and we hope to bring some patient representation with us.
