Meeting local sufferers

I looked at "people near you" and contacted a lady who lives 13 miles away from me to see if she was interested in meeting. She was happy to meet up and we met in a cafe convenient to both of us. The hour we were together passed quickly and it was lovely to meet someone who understand pma with all its problems. It's a shame Norfolk where we live doesn't have a group. It was well worth it and we will contact each other again after Christmas and meet for another coffee.

9 Replies

  • What you have just done is how a group starts - they don't just happen out of thin air! If you want to start an informal group there are several people who'll give you tips and if you find enough people within reach maybe a structured group will grow out of it. That however does require someone who take on the organisational side, organising a venue and speakers, tea/coffee and so on. But just meeting like you did in a cafe or someone's home if they feel up to it is a brilliant way to start.

    Good luck!

  • Hi Rosalind

    Great to hear you met someone.

    There are more members in your area I am sure who would love to meet for a coffee. If you email us on we can help you all get together.

  • What a lovely idea - I am in North Hants and finding Vasculitis a rare beast locally. That said Vasculitis Uk have been a huge support and the local Surrey Group has made contact.


  • Looking forward to meeting you in February, Maxine. I do hope things are going well - meanwhile please don't hesitate to get in touch again if you think I can be of any help.

  • You may like to come to Needham Market, at the southern end of the A140, for our meeting in April.

  • Thanks for the reply. I'll keep an eye out for details of time and venue at Ne4edham Market.

  • Rosalinda, you will find all details of the April 2016 meeting in the Needham Market area on the following link:

  • Rosalinda, although you don't have a local group meeting close to where you live, what you have achieved in meeting up with just one other person is all it needs to at least help remove that feeling of isolation that we can find ourselves in when diagnosed with PMR and/or GCA. I'm so pleased for you and for your new found friend! I started off by arranging a get-together at an Inn. Admittedly there were 12 of us largely thanks to the wonderful support and backing of my rheumatologist at the time. A larger group quickly formed, a venue was hired and now 4 1/2 years later, we have approaching 70 members, some being joined by their partners (no longer meeting at the Inn, of course!). From little acorns..........! Meanwhile, Vanner460 has suggested the group that meets in the Needham Market area, so if not too far from you, and you feel up to it of course, perhaps worth a day trip for you both in April?

  • That's great - thanks for all the replies and I hope to get to the Needham Market meeting

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