Rare Disease UK

 

Rare Disease Day 2012 – We need your help!

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

Dear RDUK member,

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. This year we are using Rare Disease Day as an opportunity to avoid further delay to the UK rare disease plan by calling on politicians to get in touch with the Secretary of State (or the health ministers in Scotland, Wales and Northern Ireland) to persuade him launch the public consultation, which we have been assured is imminent, but has so far been subject to delays.

As their local constituent, you have the most influence over your local politician, so we would be very grateful if you could adapt the template letters provided below and email or post them to your local politician. There is room in the letter to inform them about your condition or interest area, so please do take the opportunity.

If you represent a patient organisation please get your members in England, Scotland, Wales and Northern Ireland to send letters too – the more letters we send the more awareness we can raise! Even if you’re not part of a patient organisation, please get as many of your contacts with an interest in rare diseases to write to their local politician.

Please see below instructions on how to get in touch with your local politician and template letters depending on whether you live in England, Scotland, Wales or Northern Ireland.

Please remember, when adapting the template letters delete the instruction e.g. “[Insert name of MP]” and remember to change the red font colour back to black.

We would be interested in hearing if you get a response from your politician as this helps us to identify who has an interest in rare diseases which aids us in our political campaigning work.

Thank you once again for your help.

Best wishes,

Stephen Nutt – Executive Officer

– 020 7704 3141

If you live in England...

Please contact your local MP to ask him/her to write to the Secretary of State for Health, Andrew Lansley.

Download template letter for England

You can contact your MP by post or by email. If you are not sure who your local MP is, or if you 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 Stephen Nutt on or 020 7704 3141.

If you live in Scotland...

Please contact your MSPs to ask them to write to the Cabinet Secretary for Health and Wellbeing, Nicola Sturgeon MSP.

Download template letter for Scotland

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

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 or 0131 651 4805.

If you live in Wales...

Please contact your Assembly Members to ask them to 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/ - select “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 Rhian Morgan on or 02920 687 646.

If you live in Northern Ireland...

Please contact your MLAs to ask them to attend the Rare Disease Day event to launch the Northern Ireland Rare Disease Partnership and to contact 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://www.niassembly.gov.uk/members/constmap_res.htm

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 Stephen Nutt on or 020 7704 3141.

RDUK Secretariat
Rare Disease UK
Unit 4D, Leroy House
436 Essex Road
N1 3QP
UK.