London 14 Dec : TMAU Winter Wonderland Meetup

Meetup London Saturday 14 Dec

4pm

Marble Arch

Visit Winter Wonderland (free) 

Karen from MEBO UK is again organizing a winter meetup in London.
She also tells of a survey for Genetic Alliance UK (closes 8 Dec)

MEET UNDER MARBLE ARCH, OXFORD STREET, LONDON AT 4pm
OR CALL 07505 590972 IF LATE
REMEMBER meet up on Saturday 14th December at Marble Arch 4pm. Entrance to Winter Wonderland is free!

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Also ...
Genetic Alliance UK Survey

TMAU and MEBO UK are registered with Genetic Alliance UK.
If anyone would like to do this survey, it could help raise awareness

Hello

My name is Amy Simpson and I am a researcher at Genetic Alliance UK. You may have heard about 'CONCORD' - an NIHR-funded research study about coordinated care for rare conditions, which we are undertaking in collaboration with University College London. A key aim of the study is to find out how care is currently coordinated for those with rare conditions and how it should be coordinated in the future. This is an important piece of work, which we hope will provide valuable evidence to inform future policy.

If your organisation represents families affected by rare conditions, it would be great if you could share this information with your networks, to encourage them to take part. We need as many patients, carers and healthcare professionals as possible to share their experiences and views by completing our online national survey (bit.ly/CONCORDsurvey). They must be 18 or over to complete the survey. If they are under 18, a parent or carer can complete on their behalf.

The survey closes on Sunday 8th December.

You can read more about the survey and study here (https://www.geneticalliance.org.uk/news-event/have-your-say-on-care-coordination/). You can also download a social media toolkit from the webpage, which includes suggested social media posts, infographics, hashtags and key information to share with your community.

If you have any questions, please do not hesitate to contact me directly.

Thanks in advance for your support with this important work

Amy

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Dr Amy Simpson | Senior Researcher
Genetic Alliance UK, CAN Mezzanine, 49-51 East Road, London, N1 6AH
T: +44(0)20 7831 0883

Karen's metbo relaxing workout

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