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A very sick little girl is waiting for your help

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Please sign our e-petition – Submitted on 2013/03/17 at 10:22 pm
Health Ministers to approve funding for a National Specialised Service and the use of Eculizumab for aHUS patients without delay Responsible department: Department of Health We welcome the advice from the independent body AGNSS that people with aHUS in England should be treated with Eculizumab if they need it. We deplore the Health Minister’s decision to delay implementation of the recommendation by asking NICE to complete a duplicate assessment, thus prolonging the wait for patients whose lives could be saved or transformed by this drug.

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ITV aired Indies Story – Submitted on 2013/03/29 at 16:46 pm

WHAT ECULIZUMAB CAN DO FOR THOSE WHO NEED IT RIGHT NOW

aHUSUK realises that the case for eculizumab is based on avoiding  the severe consequences of aHUS ,which many patients are facing or  have faced. Read more
More in The Sun!
More news shared in The Sun. Read more
Downing Street 26th March 2013
The day we took our campaign to Downing Street to ask Health Ministers to show some compassion and make a wise decision to give Eculizumab to all ahus pateints who need it without delay. Read more

UTTER CONFUSION CAUSED BY NOT ACCEPTING AGNSS

aHUSUK members and supporters will be familiar with the story of Fynn, the little boy from Leicester. Read more
Blood Red Tape
HEALTH chiefs are refusing to fund a miracle drug keeping a girl of two alive. Read more
Parents beg for miracle kidney drug to keep their two-year-old daughter alive
The Mail|Online Share Indies story. Read more
GETTING TO ZERO -aHUS SURVEY
aHUSUK trustee Len Woodward said Read more
Prof. Tim Goodship : “30,000 signatures is a truly remarkable achievement”
Prof. Tim  Goodship sent us the following statement about the current position and the work being done by everyone to get a national treatment service in England Read more
Madeleine Moon MP Speaks on behalf of aHUS patients”
Madeleine Moon MP for Bridgend spoke very supportively for aHUS patients during the Queens Speech Debate in Parliament. Read more
E PETITION GOES FIFTH ON OPEN HEALTH PETITIONS”
With the  focus on the  p petition of late the e petition has quietly got on with it and has now reached fifth position. Read more
BBC Parliament 130514 7pm Eculiumab pettion”
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