Health Care for Rare Diseases living in Wales ' A patient participation event in September" organised by Public Health Wales.

[John_Mills]

Public Health Wales are hosting a patient Engagement event in September in Llanharan Rhondda in Wales they are hoping to identify 20 patients, carer's or patient representatives who live in Wales with experience of rare conditions including Vasculitis to participate in the event to talk about their experience of care in Wales. If you are interested in taking part please contact John. [e-mail] and he will send you a registration form. They will be working on a first come first served basis so it is important to get your registration form in as soon as possible.

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Hi John,

Sorry we haven't been able to respond to this. My husband and I would have been interested to attend but I have been awaiting confirmation of a hospital admission this month. It has been interesting for me that after living for 8 years with WG and noting people's reactions to this, obviously through lack of knowledge, people's reactions at being told I now have breast cancer are totally different even on learning that thankfully it is at present non invasive and should be cleared after surgery and radiotherapy. I feel this shows the importance of education on the subject of rare diseases. Many thanks for all your work in representing us all. Liberation.