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10.11.2008 |
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LOTTERY TO FUND RESEARCH INTO RARE DISEASE |
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9.11.2008 |
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Rare Disease UK |
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4.8.2008 |
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Exchange student researches AKU |
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24.7.2008 |
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Major AKU fundraising achievements by our top cyclist volunteers! |
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23.6.2008 |
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New Support section launched on AKU website |
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20.5.2008 |
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Update on Robert Gregory, Manager of the Alkaptonuria Society |
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1.5.2008 |
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AKU at Rheumatology Conference |
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20.3.2008 |
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Introducing the Alkaptonuria Information Centre |
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RARE DISEASE UK AIMS TO IMPROVE HEALTHCARE FOR PEOPLE WITH RARE DISEASES
It can be difficult for patients with rare diseases to get access to healthcare services. Rare Disease UK, launched on 7 November, aims to address this and achieve high-quality healthcare for patients and families living with these diseases.
Any given rare condition may only affect a few families across the UK, however there are many different diseases and many hundreds of thousands of families struggle to get the services they need.
With over 6,000 rare diseases identified, they will affect over 3.5 million people in the UK at some point during their lifetime, according to the Rare Disease UK website.
It adds that finding expert help is too often a matter of chance than as a result of systematic planning by the NHS.
Rare Disease UK is an alliance of patients, doctors, specialist researchers, healthcare planners, politicians and industry. The organisation will campaign for the adoption and implementation of National Plans in each of the UK's home nations.
These plans should ensure provision of integrated services tailored to the specific needs of those with rare conditions. They will help make best use of NHS resources and ensure that scarce clinical expertise is deployed for the benefit of the patient.
For more information and to join Rare Disease UK please contact Nick Meade nick@raredisease.org.uk
Read more about the first Rare Disease Day attended by the AKU Society.
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