RareDisease Day infomation from Rare Disease UK

We are only two weeks away from Rare Disease Day 2014 on the 28th February!

This Rare Disease Day is particularly special in the UK as it is the first year that the UK has had a rare disease strategy, which was launched in November 2013. Since then RDUK has been working with health departments and national health services in the devolved nations to help turn the Strategy into a reality. We are pleased with the progress that each home nation has made towards their implementation plans and look forward to the publication of their responses in time for Rare Disease Day.

Rare Disease Day 2014 focuses on care and encourages everyone in the rare disease community to Join Together for Better Care. Caring for people living with a rare disease has many facets. Some patients have access to medicines while others have no treatment available. Some patients are idependent while others require intensive physical assistance and equipment. Care can consist of specialist equipment, expert medical consultation, physical therapy, social services, medicines, respite for family members, and much more. For most children and adults living with a rare disease, primary care is provided by family members.

As members are aware, we are holding events across the UK to mark Rare Disease Day. The first event was held this week on Wednesday the Welsh Assembly. The event was a huge success and it was great to see so many people attend to mark Rare Disease Day. However, that's not all in Wales! We are inviting those who would like to raise awareness of rare diseases on the 28th of February to join us at the University Hospital of Wales in Cardiff, to officially launch the Welsh Implementation Plan. To register your place and for more information please contact Emma Hughes at ■■■■■■■■■■■■■■■■■■■■■■■■

There are only a handful of tickets available for our Scottish Reception on the 25th of February, so if you haven't already please register here.

Our Westminster and Northern Ireland events are now full but a waiting list is in place and we are taking names for those interested. To add your name to the Westminster waiting list please email Colin Gogay to add your name to the Northern Ireland conference waiting list, please click here.

Contact Campaign

We need your help in contacting politicians in each of the UK’s home nations to raise awareness of rare diseases and to encourage them to attend our parliamentary events. We are using Rare Disease Day as an opportunity to urge politicians to attend our parliamentary receptions. 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 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 to tell them your story.

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 helps us in our political campaigning work.

Press coverage

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 haven't 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.

Additional information and other ways to get involved

Download the official logos, posters, banners etc here.

Become a friend of Rare Disease Day or share your photos and videos on the official website:www.rarediseaseday.org

If you are holding an event, you can also list it on the website: http://www.rarediseaseday.org/country/gb/united-kingdom

Follow Rare Disease Day on Twitter: @rarediseaseday We will be tweeting at our Rare Disease Day events, follow us here: @rarediseaseuk

Join the Facebook group: www.facebook.com/rarediseaseday

Share the official Rare Disease Day 2014 video!

Best wishes,

Farhana Ali

Executive Officer


RareDisease Day 28th February
sees the publication of the Wales RareDisease Strategy
(The first nation, in the UK, to publish this important policy)
It will be Launched at University Hospital Wales, Cardiff by the Cheif Medical Officer for Wales at 10.00 am on 28th February.

I am living in the US do you know if we have a rare disease day here?

RareDiseease Day is a Global event browse



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Alan (Wales)