Bring rare diseases to the attention of your local politicians

Rare Diseases UK. Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy

PDF of report

Aniridia Network UK recently joined Rare Diseases UK, an alliance of industry, patient organisations and individuals developing strategic planning for rare diseases in the UK.

The European Union defines a rare disease as a disorder which affects 1 in 2000 people or less. Figures for the incidence of aniridia range from 1 in 50,000 to 1 in 100,000 which certainly makes aniridia a rare disease and WAGR/11p deletion syndrome even more so. Although each rare disease may affect only a small number of people it is estimated 3.5 million people in the UK will be affected by a rare disease at some point in their lives.

On Rare Diseases Day, 28 February 2011, Rare Diseases UK published their report Improving Lives, Optimising Resources: A Vision for the UK Rare Diseases Strategy [pdf]. The report contains some great recommendations which could really benefit people with aniridia and WAGR/11p deletion syndrome, if they were adopted by the government and health service.

Local elections are being held on the 5th May and if you live in Scotland, Wales or Northern Ireland you will have the opportunity to vote for your MSP or Assembly Member. Aniridia Network UK and Rare Diseases UK encourage you to write to the candidates in your area and encourage them to pledge their support for a strategy on rare diseases.

Rare Diseases UK have created model letters you can send to the candidates and have provided information on how to find out who the candidates are in your area. For details see:

Please take a few minutes to write to your local politicians and encourage your friends and family to do the same. Thank you for supporting aniridia, WAGR/11p deletion syndrome and rare diseases in general.

Let us and Rare Diseases UK  know who you write to and the response you get

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About Aniridia Network UK

A charity support group for people with the genetic visual impairment aniridia and their families in the UK. Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. Founded in 2000. Registered as a charity in 2011 with HMRC reference XT26830
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