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PEM Friends visit Glasgow



PEM Friends attended the conference as a Patient Support Group (PSG) and were allocated a stand in Hall 5, which we were able to decorate with a lot of PEM Friends materials.

Isobel and Phil Davies occupied the stand for the full 3 days of the conference and were pleased that we were visited by some 28 Dermatologists and Dermatology nurses.

PEM Friends PSG14 stand

The visitors were a mix of people with knowledge and expertise in pemphigus or pemphigoid, and some with little or no awareness at all. Most, however, said they had treated people with bullous pemphigoid. Around half or more of the people we spoke to were unaware of PEM Friends and the support available to patients.

View of the exhibition area from our stand


9 of these visitors completed a questionnaire about our current project, funded by BAD, on setting up a photo library. This was well received and there was a good level of interest in it. The stall next to ours was the Primary Care Dermatology Society and their leader, Dr Tim Cunliffe is advising us on our project. The PCDS have very interesting diagnostic aids which seem popular with the Dermatology community and they have a very useful diagnostic tool for GPs on their website. We have high hopes that this could be a very useful input to our own work.


PEM Friends and the Dermatology Clinical Trials Network, who were also in attendance, gave out many leaflets asking our visitors to contribute their views on the top 10 research areas for Blistering Diseases. The timing of this was perfect as we have the final areas for input to be refined down to 10.

UK Dermatology Clinical Trials Network stand


We were also able to tell some of the visitors about the work being done by the team at the Centre of Evidence Based Dermatology into Bullous Pemphigoid. Several were very interested in the current project, looking at the link between certain medications, including vaccinations, as possible triggers for BP.


8 doctors signed up to our mailing list.

Ready to go in on the last day


So what did we learn from our first visit to a conference that had other patient support groups?

Leaflets would be helpful. Other PSGs were giving these away and they may also be useful for new PEM Friends who don’t have access to a computer. Many doctors also said they would prefer to look at paper as their e-mail inbox was too full and too demanding. The PCDS gave away a lot of one sheet summaries on the main skin diseases.

Some of the PSG stalls in our area

We gave away magazines to several people and these proved very useful to communicate information such as the BP study, and that we have PEM Friends as young as 6.

Few of the talks at the conference were relevant to autoimmune blistering diseases patients or clinicians. But some of the exhibitors were of interest, such as the company selling sub-cutaneous delivery of methotrexate or the company producing low cost but dermatologically approved sunscreen.

Eczema, psoriasis, dermatitis and acne are the main diseases that are of interest after skin cancer. Many exhibitors were providing treatment for these or emollients.

Thank you to the BAD for a good conference. See you in Liverpool next year.

Another view of the exhibition area

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