Details about ‘Rare Disease Day’ of Action – 28th Feb 2013

The following was sent to Rare Disease UK members and I thought I should pass it on as it explains what is happening and how you can get involved this year. All except the first link won’t work as I am mobile but the first URL address will take you to where all this stuff is on their website.

Rare Disease Day 2013 – 28th February

Registration for the parliamentary receptions to mark Rare Disease 2013 has now opened. We will be holding parliamentary receptions on the following days and you can register here

Welsh Assembly, Cardiff – Wednesday 20th February 6pm – 8pm

Scottish Parliament, Edinburgh – Tuesday 26th February 6:30pm – 8:30pm

House of Commons, London – Wednesday 27th February 1pm – 3pm

Please note that places are allocated on a first come, first served basis so make sure you register a.s.a.p!

At the Westminster reception we will be launching our report investigating the value of care coordinators to both patients and the NHS. At the Scottish Parliament and Welsh Assembly receptions we will be launching two new reports looking at the experience of patients and families living with a rare disease in these countries.

We hope that you are able to join us at the receptions, if you are unable to attend, there are other ways to get involved in the day.

Media Work

In the run up to Rare Disease Day and on the day itself, RDUK will be trying to generate media coverage to raise the profile of rare diseases. It helps us to raise awareness if we have patients of family members affected by rare conditions who are willing to tell their stories. If you are willing to share your experience, please download and fill out this form.

Contact campaigns to politicians

We will 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 will be in touch with you in due course with more information about this, along with template letters for you to adapt.

Your activities to mark Rare Disease Day

We encourage you or your organisation to conduct awareness or fundraising activities of your own to tie in with Rare Disease Day. Things members have done in the past include: ·

Organising conferences/events

Conducting awareness days in schools

Producing Rare Disease Day materials/literature

Holding cake/jumble sales etc

Conducting local media activity

Holding special Rare Disease Day promotions in charity shops

Holding stands at hospitals with information about their condition

Holding Rare Disease Day activities in the workplace

If you are planning on holding any activity, please let us know so we can let our members know what’s happening across the country.

Other ways to get involved!

Become a friend of Rare Disease Day or to share your photos and videos on the official

Join hands around the world for rare diseases to show your solidarity with rare disease patients around the world.

Follow Rare Disease Day on Twitter: @rarediseaseday

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