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Status Of Rare Diseases And Orphan Drugs In The UK

October 25, 2012

       Rare Disease UK (RDUK) is the National Alliance for people with rare diseases and all who support them in the UK. Key statistics from the RDUK Report titled,”Experiences of Rare Diseases: An Insight from Patients and families” gives a picture as to the status of rare diseases in the UK. 

        Here are a few key statistics from the RDUK Report : 

1)  46% of patients with a rare disease wait > 1 year for correct diagnosis 

2)  20% of patients with a rare disease wait > 5 years for a final diagnosis 

3)  > 52% of patients or families identify patient organizations as the main source of information on rare diseases 

4)  75% of patients don’t have a Care Coordinator or Care Advisor 

5)  Only 35% of patients are aware of a licensed treatment for their condition. 

       Another organization, well-known think-tank 2020health.org, issues a September 2012 Report titled, ”Forgotten Conditions: misdiagnosed and unsupported, how patients are being let down”, which supports the above statistics from the RDOK Report. The 2020health.org Report says that in the UK, there is a “growing problem of GPs missing or misdiagnosing rare diseases ….. professionals whose overwhelming focus is on treating a handful of major illnesses rather than developing systems for diagnosing and treating the increasing # of rare diseases. As a result, thousands of people suffer for years with misdiagnosis and inadequate treatment”.   

 References 

Orphan Druganaut October 22, 2012 Blog Post titled, “What is the status of Patient Access to orphan drugs in the UK ?”  

Copyright  © 2012-2013, Ann-Teresa Cusenza and Orphan Druganaut Blog.  All rights reserved.

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