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 Please contact your local politician to raise awareness of rare diseases on Rare Disease Day and help to ensure the success of the UK plan for rare diseases

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PostSubject: Please contact your local politician to raise awareness of rare diseases on Rare Disease Day and help to ensure the success of the UK plan for rare diseases   Thu Jan 17, 2013 4:22 pm

Please contact your local politician to raise awareness of rare diseases on Rare Disease Day and help to ensure the success of the UK plan for rare diseases. It’s that time of year again when we ask for your help in raising political awareness of rare diseases ahead of rare disease day. We are using Rare Disease Day as an opportunity to urge politicians to attend our parliamentary receptions and to get in touch with the Secretary of State for Health (or the Health Ministers in Scotland, Wales and Northern Ireland) to raise awareness for the rare disease plan and ask how it will be implemented.

If you live in England

Please contact your local MP to ask him/her to attend the reception at Westminster to mark Rare Disease Day 2013 and write to the Secretary of State for Health, Jeremy Hunt MP.

Download template letter for England

You can contact your MP by post or email. If you are not sure who your local MP is, or would like to look up their contact details to email them, you can find this online at: http://findyourmp.parliament.uk/

An easy way to contact your MP is through http://www.writetothem.com/

If you have any questions , you are having difficulty finding out who your MP is, or would like some further assistance, please contact Devinder Degun on devinder@raredisease.org.uk or 020 7704 3141.

If you live in Scotland

Please contact your MSPs to ask them to attend the reception at the Scottish Parliament to mark Rare Disease Day 2013 and write to the Cabinet Secretary for Health and Wellbeing, Alex Neil MSP.

Download template letter for Scotland

You can contact your MSPs by post or by email. If you are not sure who your MSPs are, or if you would like to look up their contact details to email them, you can do this online at: http://www.scottish.parliament.uk/msps.aspx

Remember you have 8 MSPs in total, 1 constituency MSP and 7 regional MSPs. If possible, could you send/email the letter to each?

An easy way to email all of your MSPs in one go is through http://www.writetothem.com/ - select “write to all your MSPs” after putting in your postcode.

If you have any questions, you are having difficulty finding out who your MSPs are, or would like some further assistance, please contact Natalie Frankish on scotland@raredisease.org.uk or 07944765654.


If you live in Wales

Please contact your Assembly Members to ask them to attend the reception at the Welsh Assembly to mark Rare Disease Day 2013 and write to the Minister for Health and Social Services, Lesley Griffiths AM.

Download template letter for Wales

You can contact your AMs by post or by email. If you are not sure who your local AMs are, or if you would like to look up their contact details to email them, you can find this online at: http://www.assemblywales.org/memhome.htm

Remember you have 5 AMs in total, 1 constituency AM and 4 regional AMs. If possible, could you send/email the letter to each?

An easy way to email all of your AMs in one go is through http://www.writetothem.com/ - “write to all your AMs” after putting in your postcode.

If you have any questions , you are having difficulty finding out who your AMs are, or would like some further assistance, please contact Devinder Degun on devinder@raredisease.org.uk or 020 7704 3141.


If you live in Northern Ireland

Please contact your MLAs to draw their attention to the 2013 Rare Disease Day conference and to ask them to write to the Minister for Health, Social Services and Public Safety, Edwin Poots MLA.

Download template letter for Northern Ireland

You can contact your MLAs by post or by email. If you are not sure who your local MLAs are, or if you would like to look up their contact details to email them, you can find this online at: http://aims.niassembly.gov.uk/mlas/findmlas.aspx

Remember there are 6 MLAs representing each constituency. If possible, could you send/email the letter to each?

An easy way to email all of your MLAs in one go is through http://www.writetothem.com/ - select “write to all your MLAs” after putting in your postcode.

If you have any questions, you are having difficulty finding out who your MLAs are, or would like some further assistance, please contact Christine Collins on christine@nirdp.org.uk or 07843256442.
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Please contact your local politician to raise awareness of rare diseases on Rare Disease Day and help to ensure the success of the UK plan for rare diseases

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