We have been contacted by Rare Disease UK asking for our members to help support Rare Disease Day 2012.

It’s that time of year again when we ask you to contact your local politician to 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.

For more information about the campaign and copies of template letters to send to your local politician, please click on this link.

Events and activities to mark Rare Disease Day
There is a good spread of activity taking place across the UK, but with your help, we can raise awareness across more locations! Rare Disease UK will be represented at many of these events (we are roping in staff from our parent organisation, Genetic Alliance UK!) We have a limited amount of materials (posters, wristbands, reports etc) we can distribute if you are holding any activities, so please get in touch if you would like some:  stephen@raredisease.org.uk  

Rare Disease Day at Stormont Pavilion - Belfast
At this event the new Northern Ireland Rare Disease Partnership will be officially launched. In addition the Patient and Client Council will be launching a new report outlining the findings of a survey conducted into the experiences of obtaining a diagnosis of a rare disease in Northern Ireland. We are delighted that the Minister for Health, Social Services and Public Safety will be speaking at the event and we hope to see many Northern Ireland Assembly Members (MLAs) in attendance.
11:30am - 2pm, the Pavilion Stormont Estate (29th February)
RSVP essential as places are limited. For more information, please contact Sarah McCandless at the Patient and Client Council - sarah.mccandless@hscni.net  028 9032 1230t

Rare Disease Day West Yorkshire - Bradford
Bradnet invites you to a meeting to celebrate International Rare Disease Day, on Wednesday 29th February, a rare day! There is a high prevalence of rare conditions in West Yorkshire, and this has stimulated collaboration in research, data collection, and development of services. We feel that we have a lot to celebrate, but there is also much to be done, and we hope to encourage more joint efforts to support children and adults with these conditions.
This event is CPD accreditated.
9:30am - 1pm, Carlisle Business Centre, Bradford
For more information, please contact Donna Tattersall, donna.tattersall@bradnet.org.uk or call 01274 224444 Ext.528k

Rare Disease Day at Royal Holloway University
Following last year’s successful event, Royal Holloway University, London, will be holding another awareness raising event on Rare Disease Day. All the information about the event, including exhibiting opportunities, is available on the following website: http://www.rhul.ac.uk/rarediseaseday or please contact Dr Rafael Yanez rafael.yanez@rhul.ac.uk

Rare Disease Day event in Belfast
The Cavan Tommy Hoey Trust is holding an event on the 29th February at Heyns Hall, St Marks Church, Holywood Road, Belfast from 7.00 pm to 9.00 pm to mark Rare Disease Day. This event is open to all.

Queen Elizabeth Hospital, Birmingham
Nurse specialists for a range of different rare diseases will be manning an information stand about rare diseases and the conditions managed at the hospital. It is hoped patients, visitors and staff will visit the stand to learn more about rare diseases.
For more information, please contact Steven Wise Steven.Wise@uhb.nhs.uk

Information stand at University of Leicester
The Primary Ciliary Dyskinesia Family Support Group will be holding an information stand about the condition and Rare Disease Day at the University of Leicester.

Media work
Keep an eye out in the Independent newspaper as there will be a feature supplement on Rare Disease Day again this year...
Have you considered contacting your local newspaper or radio station about a story to raise awareness of Rare Disease Day with a case study, news on research you are conducting or any awareness raising activity you are holding? The best way to do this is by writing a press release and sending it to your local media outlet.
If you have not written a press release before, you can find a number of guides such as this (http://www.wikihow.com/Write-a-Press-Release) by searching for “how to write a press release” in a search engine.
You might find the “Key Messages” document in the “Additional information and other ways to get involved” section below of use.
RDUK will also be trying to generate media coverage to raise awareness on the day. It helps us to raise awareness if we have patients or family members affected by rare conditions who are willing to tell their story. If you are willing to share your experience, please fill out the form below. Also if you represent an organisation, please feel free to circulate this more widely.
Download the media volunteer form (Word doc)
Please return your completed form, if possible with a picture, to stephen@raredisease.org.uk  or by post to Rare Disease UK, Unit 4D Leroy House, 436 Essex Road, London, N1 3QP.
We cannot guarantee that all volunteers will be picked by the media, but we will certainly do our best!

Additional information and other ways to get involved
Download our Rare Disease Day 2012 Key Messages
Download the official logos, posters, banners etc here: http://www.rarediseaseday.org/article/download   Become a friend of Rare Disease Day or share your photos and videos on the official website: www.rarediseaseday.org
Follow Rare Disease Day on Twitter: @rarediseaseday
Join the Facebook group: www.facebook.com/rarediseaseday
Distribute the official Rare Disease Day 2012 video! http://www.youtube.com/watch?v=LBVug-GVLg0

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