Sick of always having to explain your condition?  Join us for a cuppa on Saturday 20th July in Edinburgh and chat with people who just get it. 

When you live with a rare condition, we understand that it's good to meet people with the same or a similar rare condition as you.  This is why we are bringing our rare communities together for an informal and fun afternoon with cake and coffee!

We know that it can be hard to commit to something when you have a rare condition, so if you are interested, but not sure you will be able to make it, sign up anyway, that way you'll get the information nearer the time, and you can see how you feel on the day. 

It is incredibly important to meet people in person in my opinion...  and to have someone...  who has also been through it all is such a blessing in a very isolated world!

Why should you come?

  • So you can have a cup of tea or coffee with someone who you don’t have to explain your condition to
  • Enjoy a really good chinwag with someone about the symptoms/side effects that are bothering you at the moment
  • To learn all about the support available from your charity
  • There will be cake!

I was diagnosed ... in 2017 I have never met anyone with the same diagnosis so going to the coffee morning and meeting people who knows what my condition is was great!

Hosted by Jeannie

This coffee morning will be hosted by Jeannie, a representative of Fanconi Hope, one of the six rare bone marrow charities in the Better Together project, and is looking forward to hosting the Rare Communities Coffee and Chat meeting in Edinburgh.

Jeannie co-founded Fanconi Hope along with her husband Bob and 2 other like-minded parents in 2008.  In her spare time she enjoys art, gardening and walking and she is looking forward to the Edinburgh Fringe festival - a real hoot!

Jeannie lives in Edinburgh with her husband and their large ginger cat Alfie.  She has two grown-up children who volunteer on occasions such as the Fanconi Hope Family Conference Weekend.

If you're nervous about coming along, or want to know more, please drop Vicky an email in advance at [email protected] or give her a call on 07563 753281.

Your Data 

In order for us to be able to deliver and evaluate the success of this event as part of the Better Together for Healthy Bone Marrow Alliance Project, the data you provide will be shared with The Aplastic Anaemia Trust and Insley Consulting

Please check the box on the next page to confirm you understand this and are happy to proceed. 

With thanks

This project is supported by The National Lottery Community Fund – thanks to players of The National Lottery. 



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Rare Communities Chat and Coffee in Edinburgh

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