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Status Of Rare Diseases And Orphan Drugs In The UK

December 19, 2012

        The following 2 reports present the current status of rare diseases and orphan drugs in the UK :

1) The first report titled, ”Forgotten Conditions: Misdiagnosed And Unsupported, How Patients Are Being Let Down”, is published in September 2012, by the well-known think-tank The report says that rare diseases in the UK are either misdiagnosed or missed by GPs, and it is a growing problem.

2) The second report titled, ”Experiences Of Rare Diseases: An Insight From Patients And families”, is published by Rare Disease UK (RDUK), a National Alliance for people with rare diseases in the UK. Key statistics from this report support the claim by the first report, that rare diseases in the UK are either misdiagnosed or missed by the healthcare establishment.

          A UK November 20, 2012, article titled, “Govt Urged Over Access To Rare-Disease Drugs”, summarizes 358 responses that have been received by the Department of Health’s consultation, on the proposed UK Plan for Rare Diseases. The UK government has been told that “ … earlier-access schemes for drugs to treat these conditions (rare) should be considered ….”. The UK Plan for Rare Diseases is to be published during the 1st half of 2013.

            The UK’s November 2012 Department of Health Report is titled, “Consultation on the UK Plan for Rare Diseases – Summary of Consultation Responses”.

             Another good source of information about UK rare disease policy and regulations, is a report titled, “Improving Lives, Optimizing Resources: A Vision for the UK Rare Disease Strategy” published by the Rare Disease UK (RDUK) organization. 

Rare Disease Day, February 28, 2012, In The UK

       UK parliamentary receptions to mark Rare Disease 2013 will be held on the following days :

  1. Cardiff – Wednesday 20th February 6pm – 8pm
  2. Scottish Parliament, Edinburgh – Tuesday 26th February 6:30pm – 8:30pm
  3. House of Commons, London – Wednesday 27th February 1pm – 3pm.


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

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