News and Blog

News and Blog
News

Date:
21-12-12

Author:
Empower

December Empower Newsletter

December Empower Newsletter

I would like to take this opportunity to thank you for all your support this year; I have been truly overwhelmed by how much progress the campaign has made. The last month has been particularly busy for us and I would like to share with you some highlights.

Baroness Masham, a crossbench member of the House of Lords, highlighted the Empower campaign in a debate in the House of Lords on improving neurological services. In this debate she emphasised how long it takes, and how costly it is, to bring new drugs to market in the UK. Baroness Masham has also written a blog for us on why she raised the issue in Parliament.

We have also received blogs this month from:

  • Geoffrey Clifton-Brown MP who focuses on recent updates to the  Life Sciences Strategy and the welcome news that £100m has been committed by the Government to roll out DNA mapping for patients with rare diseases
  • Leela Barham, an independent health economist and 2020health research fellow, has written for us on the subject of orphan medicines, and specifically the lack of access to them and the knowledge and expertise needed by clinicians.

I was pleased to contribute to a recent edition of More or Less on Radio 4 last week. I wrote to the programme to highlight the ambiguity over what is actually meant by the term ‘rare’. It provoked a lively discussion regarding the statistics behind defining what is ‘rare’ and what is a ‘rare disease’. Please do have a listen.

Our social media outreach continues to engage and raise awareness with a wide number of campaigners, charities, politicians, but more importantly patients and their families.  As a result of our recent activity we have increased our number of followers to 182. Special mentions should go to @CASMI@2020Health, @GeneticAll_UK@findAKUre, @CureTheProcess, @treewaytherapy, @HMSACharityMarianne VennittiRosa Silveira, @ValyaWatson@PacificCove, @SusieHillsCentre for Behavioural MedicineRose Woodward and @NAITbabies for tweeting us. If you do not do so already, please follow us @empoweratm and join the discussion.

I would also like to draw your attention to a fascinating two-day Symposium on Rare Diseases to be held at St Catherine’s College, Oxford on Thursday 31st January and Friday1st February 2013.  This event will bring together academic, pharma and clinical researchers, with a focus on rare disease, to create awareness about the need to increase efforts in understanding and generating new medicines, thus enabling quicker and earlier access to new treatments. Click here for further details.

Let me also take this opportunity to wish you all a Merry Christmas and a prosperous New Year.

With very best regards

Les Halpin

 

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