Getting together face to face

Group of about 15 people in a room with microphones on stands. A small screen shot of a zoom meeting containing about 25 people is inset into the picture.

UK wide meetings

In September 2023, we met as a UK-wide group. Many people called in via Zoom. The meeting was enabled by a grant from the National Lottery Communities Fund and the support of a very clever technical person who gave his time for free.

We met in the Thornton Heath Evangelical Church, which was a fabulous venue for our meeting with a hall and breakout rooms and plenty of windows through which the blistering sun poured in.

Eleven people made the journey to meet up in person while 38 people joined us via Zoom. The objectives of the day were:

Enjoyment
Sharing with others
Learning something useful

A group of people sitting around a table listening to a speaker who is standing in front of a powerpoint presentation.

During the day, we had several small surveys about people’s experience of their disease, and there were several breakout sessions so we could chat in small groups about a particular item.

A guest speaker, Rosie Hancock, ran a thought-provoking, educational and interactive session on resilience.

After the lunch break, we watched a short video from Marc Yale of the International Pemphigus and Pemphigoid Foundation (IPPF).

We had two smaller group meetings. One was according to disease type, with PEM Friends with PV/PF or with MMP or with BP chatting together, sharing experiences and things they had discovered which helped in managing their condition. The second small groups were divided by region. It was useful to start the regional conversation about the treatment and care situation in different parts of the UK.

People were keen to talk to others, create new relationships and renew existing acquaintances. The PEM Council, who had met in person for the first time ever as a team just the previous day, worked really hard to keep us on time and running smoothly.

We hope to have similar get togethers in the future, however, the level of effort required to plan and run an event like this, and the cost and the number of attendees have resulted in the PEM Council deciding not to have a Grand Get Together in 2024. With sufficient financial means and committed attendance, we hope to run another such meeting in 2025 which will be our PEM Friends silver anniversary.

Regional groups

During 2024, we aim to set up some Regional Groups in those areas where there is a PEM Friends volunteer willing to arrange for people to meet.

The first Regional Group is planned for May 2024 and we hope it will form a pilot for other regional groups around the UK.