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Our story

PEM Friends are a patient support group founded in 1999 by Carolyn Blain, who, having experienced the traumas of Pemphigus Vulgaris herself, wanted to offer support to other PEM patients or carers.


We achieved charity status in February 2024, having operated previously as a very successful small and informal group.


The PEM Friends trustees are mostly formed from the managing group, the PEM Council. The Council, a team of volunteers all of whom are challenged themselves by either pemphigus or pemphigoid, works hard to set the strategy and ensure that PEM Friends fulfils its aims. Every year, we build an ambitious plan and progress the ways we support patients and their loved ones, as well as spreading the word about autoimmune blistering diseases to the people who need to know about them.


Since 1999, we have, amongst many other things:


We now hope to grow small local PEM Friends communities in regions across the UK who can swap information about local resources and provide more intimate, possibly face to face, support.


Although we are focussed on people in the UK who have been diagnosed with either pemphigus or pemphigoid, or those who care for them, we are affiliated with other UK organisations and international groups who support us in our goals.


Our funding comes from ad hoc and regular voluntary donations, fund-raising events and grants that fund specific projects. The governance of PEM Friends is based on our constitution.


Having now registered as a Charitable Incorporated Organisation, the next chapter of our story will be to develop PEM Friends further.

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