We do not have any funding, so any help offered comes from other sufferers who can offer personal advice or experience . Most people find there is someone out there who has or is going through a similar experience to them or their loved one.
We try to keep up-to-date on any research or medical updates related to the diseases, but we do this on an ad hoc basis, (unsupported by any personal medical expertise, although with access to some excellent specialist advice). There are usually 2 main issues that our members report – the difficulty in getting a diagnosis and the problem of finding a local expert who understands the diseases and can provide the best and most up-to-date treatment.
There are many options on the sorts of treatment regimes and products that ease the symptoms. We have tried to offer some information on these on the Resources page, but we are always open to further suggestions. Everyone is unique – what works for one may have no impact at all on another. Some of the side-effects can be dramatic, too.
Most support is via e-mail, but we do meet for lunch once or twice a year, usually with an expert Dermatologist or another specialist available to chat about the diseases and any recent developments.