Tuesday 28 February 2012

February 29th is Rare Disease Day 2012

In the words of the the Rare Disease UK network:

  • 1 in 17 people will be affected by a rare disease at some point in their life.
  • This amounts to approximately 3.5 million people in the UK.
  • 75% of rare diseases affect children and 30% of rare disease patients will die before their 5th birthday.
  • There are over 6,000 recognised rare diseases.
  • Collectively rare diseases are not rare.
Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them. We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support.
One of those rare diseases is Li Fraumeni Syndrome, and the George Pantiarka TP53 Trust is proud to announce that it has joined RDUK. To find out more about the network, and what it's doing for Rare Disease Day 2012 please take a look at: http://www.raredisease.org.uk/news/rdd2012_2weeks.htm

In particular note that there's a political angle to this campaign:

It has now been over 2 years and 9 months since the Government signed the European Recommendation which committed them to developing a plan for rare diseases.
It has been a year since Rare Disease UK launched our comprehensive recommendations to inform the plan in our report Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy

As a result, we are using Rare Disease Day to call for no further delays to the plan. Please help us to do this by writing to your politician! If you have done so already, thank you very much – we have had a fantastic response rate! RDUK has also been busy contacting politicians, but as their constituent, you have the most influence over your representatives.

Information on how to contact your local politician and template letters depending on whether you live in England, Scotland, Wales or Northern Ireland are available here.

Let's hope that the activity and extra focus on February 29th has an effect at last.

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