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Campaign with us to make things better for people who are affected by pituitary conditions.

We need your support to help us raise awareness of pituitary conditions so we can make a difference to people's lives.  We are working harder than ever to campaign on key issues facing pituitary patients to improve care and services. 

We speak to public services (e.g. GPs, ambulance services), politicians, other charities, businesses and the general public to raise awareness and understanding of pituitary conditions.          

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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.

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.

Stephen Nutt - Executive Officer
stephen@raredisease.org.uk         020 7704 3141

Below are 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.)

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: England letter.doc
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 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: Scotland letter.doc
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 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: Wales letter.doc
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 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: Northern Ireland letter.doc
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.

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Emergency Hydrocortisone injection device petition results

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The deadline for signing our petition for an emergency injection device has now been reached (31st March). We are very pleased to report that we have received 5,631 signatures, both online and on paper.
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We would like to thank everyone who took the time to support this initiative - your help is greatly appreciated. We will now start work on the next step in the process and we will keep you all informed of progress by news items on this web site.

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"We the undersigned ask the Minister for Health to urge the NHS to source a device like an Epi-Pen so that pituitary patients can self-administer Hydrocortisone injections when they become ill. The current and only injection device available is not easy for a non medical person to use. This would lead to lower overall cost of care and improve the quality of life for people with pituitary conditions in the UK."

April 2011 
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Other ways in which you can help to raise awareness:

 We need volunteers to tell their story, click here to find out more:  Community Stories