PEM Friends has attended the European Dermatology and Venereology Annual Congress 3 times now. Twice in person and once virtually.
We were able to attend the conference to further our aims of building awareness of our diseases, learning more about the development of treatments for autoimmune blistering diseases and collaborating with other patient organisations thanks to the Global Impact Fund granted by GlobalSkin (the International Alliance of Dermatology Patient Organisations) of which we are a member.
Trina and Isobel attended this congress “live” along with our long suffering husbands, Phil and Simon. Isobel was there for the first half of the conference and Trina for the second half as Trina was at her daughter, Jess’s, graduation and Isobel was at a wedding on the Saturday. Since we were only allowed 2 free tickets, Phil was Trina for 2.5 days and Simon then became Isobel. Confusing or what?
Isobel and Trina are ready to talk
Scheduling talks and booth time was a bit of a nightmare as was the planning overall - we had to master the technology and the conference programme was huge – so many sessions - although not quite so many that were relevant to our own blistering diseases.
Part of the scheduling
Cheap flights were late at night and meant we had to arrive one day earlier to allow us to get to the Conference early for our booth on Wednesday morning. It also made arrival times very, very late. Trina got to bed at 3am on Thursday morning.
We had quite a nice Italian AirBnB (although had an exciting evening on Thursday trying to gain entry through the various security obstacles, only to discover we were trying to get entry to number 3 – we were staying at number 5!)
How interesting to travel to and from the conference centre on the Lilac line on the Metro. The station was a 15 minute walk through the streets of Milan and past the huge crematorium.
The conference centre was absolutely HUGE. It looked like an armadillo draped across a boulder from the outside and was vast inside. Our booth was on the lower ground floor and we were a little disappointed that we were out of the way of the large number of Dermatologists travelling to the talks and the exhibition area.
The wonderful conference centre
PEM Friends were given booth time for 9 hours over the 4 days, but ended up helping man the GlobalSkin and IPPF sessions too.
We attended a GlobalSkin reception on Wednesday preceded by a series of presentations by other patient groups about some of their projects. We learnt a lot and came away with some great ideas. The buffet and prosecco was pretty good too. Thank you GlobalSkin.
The GlobalSkin area
Our friend Marc Yale from the IPPF, enabled us to access a talk by Janssen about a new treatment “Exploring the world of bullous pemphigoid: unmet needs and new therapies”. This talk, which included DeeDee Murell, Joost Meije and Prof Joly (all very eminent internationally in the field of bullous diseases) was extremely interesting and the new treatment being developed by Janssen sounds very well worth further investigation. I also spoke to the Janssen lady who had produced an excellent animated video. She also told me that they hoped to produce a slightly less technical version for patients.
There were a disappointing number of visitors but those who did stop and chat were very interesting. The people involved in the various journals were particularly good to talk to and we are hoping we might be able to help with some articles from a PEM patient perspective.
Thursday night was spent in conversation with the IPPF and we managed to find a restaurant on our way home and had a very enjoyable and very productive dinner. Thank you for supper, IPPF. A new experience too – queuing for an ice-cream at 11pm. It was worth it though.
An evening out with our IPPF friend Marc
Towards the end of the congress, there were many more talks that were relevant and it was hard to choose the most interesting ones:-
What does shared decision making look like for patients?
While one of us manned the PEM Friends booth (at 8.30am – 10.30am), the other attended a session by Marc Yale, “What does shared decision making look like for patients?” This was an informative session but it was disappointing to see how few Dermatologists were present. There were many Patient Support Group Leaders represented.
Examples of other talks of interest were:
Early recognition of non-bullous variants of Pemphigoid
Novel promising biological treatments for bullous pemphigoid
Bullous pemphigoid: Gaps and perspectives in management
Patient Association Working Group Roundtable
The final session of the conference was the “Patient Association Working Group Roundtable”. This interactive roundtable was developed by the EADV Patient Association Working Group (PWG) together with the International Alliance of Dermatology Patient Organisations (IADPO-GlobalSkin). This was a workshop style patient centred session.
The EADV and IADPO-GlobalSkin are addressing these areas and will be in touch in the future with a report and will identify the most popular areas that will be addressed.
The Patient Association Working Group Roundtable
Trina and Isobel were exhausted by the end of the week and had probably walked many, many kilometres. Trina’s journey home was the highlight of the week. Her flight was delayed and she got home at 3am again.
PEM Friends would like to thank them for all their efforts on our behalf. Our voice is growing and we will get PEM out there.
Further details can be provided in the report we will publish on the event. Do ask.