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JayKayPee
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Just working out how to use this site. Great news- the doctors in Cambridge and Papworth interested in DC are starting an interest group to improve services and treatment. I'll be the first time that the haematology, lung and liver people have met up.
They have Anne Kelly who is a paediatric haematologist and various others - not sure whether they are adults or adult/children or just children - this is an informal meet up of Cambridge people who are interested. I will suggest a meeting where anyone interested can drop in. I'm hoping that everyone will want to combine their clinics (and get all the scan/other diagnostic facilities etc lined up) so that would be a good time to have a regular open meeting.
I'm collecting ideas to put to the group from us patients/families
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