Campaigning News

 

  • Government announces plans to implement the UK strategy for rare disease with NHS England

    Philip Dunne MP, Minister of State for Health has announced that NHS England will develop an implementation plan for the commitm..


  • Campaign call to write to your MP to challenge unfair access to medicine and care for people with Rare Diseases - ahead of a Westminster debate.

    Recently, the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions published a report which showed that the..


  • NHS England Agrees to Fund Everolimus for SEGA

    We are delighted to announce that NHS England will now routinely fund Everolimus for inoperable TSC brain tumours (SEGA). This m..

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  • #Fight4Treatment - on BBC Radio York

    Our #Fight4Treatment campaign has also been featured on BBC Radio York this morning. You can find out more, and listen to the ra..

  • #Fight4Treatment update - Mail on Sunday article

    Our #Fight4Treatment was featured on page 62 of the Mail on Sunday, October 9 - you can read it on the link here. http://www..

  • #Fight4Treatment makes The Daily Express

    NEWSFLASH Our #Fight4Treatment has made The Daily Express newspaper today with an compelling interview with Samantha-Jayne H..

  • The Times publishes NHS consultants' #Fight4Treatment protest letter

    Here is the text in full of the letter published in today's The Times newspaper, in which NHS consultants express their shock an..

  • NHS England devastating U-turn on drug treatment for brain tumours

    NHS England devastating U-turn on drug treatment for brain tumours Last year NHS England promised to develop an in year ..

  • Everolimus prescribing policy (England)

    We are delighted to announce that NHS England have released the prescribing policy for the treatment of angiomyolipomas (AMLs) i..

  • Everolimus proven effective in the treatment of Epilepsy.

    A Novartis Phase III clinical trial has shown that Everolimus significantly controls seizures in TSC patients when taken in addi..

  • #Fight4Treatment consultation underway now - have your say

    The NHS is now carrying out a consultation on the provision of Everolimus to treat SEGA tumours. It is very important that a..

  • #Fight4Treatment, the time to act is now

    Rare Disease Day, 29th February 2016 We are expecting that NHS England will give their decision on whether the NHS in England w..

  • TS Care Treatment - Are you receiving it?

    A new report shows that many people with TS may not be receiving the right care and treatment. TSA Trustee Dr Chris Kingswo..

  • The fight for treatment in England goes on

    It's Rare Disease Day on February 29th. Below you can see the official video, or visit their site HERE (http://www.rarediseaseda..


  • NHS England confirms review of Everolimus for TSC

    When Everolimus was licensed for the treatment of TSC, no-one imagined that more than 2 years later we would be campaigning for acce..

  • MPs support call for Access to Medicine - Ministers Urged to Intervene

    Greg MulHolland MP led a debate in parliament yesterday (16 June 2015) to highlight failures access to medicines for rare diseas..

  • NEWS FLASH: NHSEngland Publishes Urgent Need Policy

    NHS England has now published the long-awaited urgent and critical need policy. If you or someone you care for has had an indivi..

  • Greg Mulholland MP secures parliamentary debate

    Greg Mulholland MP has secured a parliamentary debate entitled ‘Access to drugs for ultra-rare diseases’! It’ll be..

  • NHS England to Publish Policy on Urgent and Critical Need Access

    Six months ago we launched our campaign – and today we are delighted to announce our first significant victory in our Fight4Tr..

  • NEWS FLASH: Ministers Asked to Intervene...

    When Everolimus was licensed for the treatment of TSC none of us imagined that years later we would still be fighting for access. ..

  • NHS England drug delay led to ‘absolutely preventable’ deaths

    Exclusive: NHS England drug delay led to ‘absolutely preventable’ deaths 17 March, 2015 | By Shaun Lintern (http://..

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  • URGENT - WE NEED YOUR HELP

    When Everolimus was licensed for the treatment of TSC more than 2 years ago, no-one imagined that years later we would still be figh..

  • Access to medicine in England – We urgently need your help!

    When Everolimus was licensed for the treatment of TSC more than 2 years ago, no-one imagined that years later we would still be figh..

  • Your help urgently needed to secure NHS services and treatment for TSC

    NHS England is currently failing to properly support patients with TSC and the dedicated NHS professionals who care for them. It is ..

  • Petition on access to medicines in Wales referred on for Review.

    Earlier this year we joined forces with the Genetics Alliance and the Association for Glycogen Storage Disorders to petition the Nat..

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