Parliamentary MDS activities

Details of upcoming events and fundraisers. Please add your own post - and update us about your great challenges. Thank you!

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sophie
Posts: 249
Joined: 20 Nov 2008 14:05
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Parliamentary MDS activities

Post by sophie » 28 Oct 2010 19:48

This is a folder where anyone can discuss anything connected to the MDS Parliamentary activities and the work with MP's.
Please share your experience here so that others can replicate the good work with their own MP.
Thank you
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Parliamentary MDS activities - Rare Disease Day - 28th F

Post by sophie » 18 Feb 2011 12:55

Rare Disease Day
4 receptions will be organised throughout the country on 4 separate days to raise awareness of rarer conditions such as MDS.
If you are able to attend on of the following days - please reserve your place as soon as possible - there is a high demand for them apparently!
And please do invite your MP to join as well.

- Scottish Parliament: 22nd February 6:30pm – 8.30pm

- Westminster: 28th February 4pm – 6pm

- Northern Ireland Assembly: 3rd March 12pm – 2pm

- Welsh Assembly: 16th March 12pm – 2pm

Please note that you must register in advance to attend these events. To register please send your name, address and contact email/telephone to:

- Scottish Parliament event: scotland@raredisease.org.uk (Natalie Frankish – 0131 651 4805)

- Westminster event: assistant@geneticalliance.org.uk (Paula Barbosa – 020 7704 3141)

- Northern Ireland Assembly event: stephen@raredisease.org.uk (Stephen Nutt – 020 7704 3141)

- Welsh assembly event: williamsbg@cardiff.ac.uk (Buddug Williams – 02920 687 646)

Full details and website:
http://www.rarediseaseday.org/country/u ... %20kingdom
This information has also been posted on your website and Facebook

The Independant newspaper will run a supplement on Rare Diseases on the 28th February - and MDS UK will feature in an article.
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
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