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 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. Download the template letters and find more information here. 

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 website: www.rarediseaseday.org   

Join hands around the world for rare diseases to show your solidarity with rare disease patients around the world. http://www.rarediseaseday.org/article/joining-hands-around-world   

Follow Rare Disease Day on Twitter: @rarediseaseday  

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

For more information about Rare Disease Day please email