What do we do?

 

Our main aim is to provide support and advice to people diagnosed with Pemphigus or Pemphigoid. None of us are experts, but, as fellow patients or carers, we have a lot of experience and empathy to share.

 

Most people coming to us find there is someone here who has or is going through a similar experience to them or their loved one.

 

However, we do have the aim of expanding awareness of the disease in order to speed up diagnosis and improve treatment options.

 

We try to keep up-to-date on any research or medical information related to the diseases, but we do this on an ad hoc basis and have limited access to medical experts on a very informal basis at the moment.

 

We also work with the medical community as patient representatives in several studies and programmes.

We welcome enquiries and requests and are also delighted to hear from anyone willing to provide support and share their experiences. We would also like to hear from you about the things that have proved effective in the management of your disease, including products or methods you have discovered for minimising pain and the impact of the blistering.

 

Most of the information on the website is copied from other resources. Many of these are listed in the Useful Links section. We are particularly grateful to the IPPF, with whom we are allied as well as collaborating with other groups.

 

We strongly advise investigating more sources of information about Pemphigus and Pemphigoid via all the links and elsewhere. On this site, we can only offer summary information and advice and we may not be 100% up to date on current thinking or treatments.

 

PEM FRIENDS ACCOUNTS

Donations go towards all sorts of things, but mostly the website and communications, plus travel for conferences to learn from and input to research into our disease. 

If you would like to contribute, donations can be made to:

HSBC
A/C: 51504525
S/C: 40-08-33
Account name:  PEM FRIENDS