aHUSUK and Answers for aHUS are no more. For up to date news and views about aHUS and cTMA go to my Twitter and Facebook pages. Twitter @ahusukvoice for UK CTMA Facebook @answersforahus for “aHUS UK ” or if you want to read the latest from a well liked website go to www.ahusallianceaction.org click HERE… Continue Reading
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A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)
Author Archives: aHUSUK
Ravulizumab for aHUS in UK
Ravulizumab is the next generation complement inhibitor for aHUS. It still uses eculizumab as the active ingredient but the drug has been re engineered to be effective for longer in the blood. Infusions of Ravulizumab are therefore done at eight week intervals instead of every two weeks for eculizumab. It has had marketing authorisation in… Continue Reading
Ready, get SETS, Go!
The UK Trial of the withdrawal of eculizumab treatment for aHUS patients formally commenced on 1 September. Known as SETS – Stopping eculizumab treatment safely the trial will be the most statistically significant exercise done so far about who can successfully withdraw from treatment and what factors may have determined that success whilst ensuring the… Continue Reading
Special T Shirt for aHUS Awareness Day
During last years aHUS Awareness Day 2016 the aHUS alliance was asked if there were any T shirts available which could be worn to raise awareness. So a T shirt has been designed and are available for purchase from Zazzle who have turned the design idea into an attractive garment and are producing e and… Continue Reading
AHUS and TMA facts for aHUS awareness day 2017
On 24 September it will be aHUS awareness day 2017. This will be the 3rd aHUS awareness day held around the world and it is has been usual for Answers for aHUS and aHUSUK to mark the run in with a series of aHUS information to be aware of. This year the theme is about… Continue Reading
aHUS Research in Salford
An article has been found about aHUS Research taking place in Salford Royal Hospital ( click here) . Answers for aHUS has no knowledge about what that research is setting out to discover. Hopefully patients will be told when the researchers are ready to use their DNA because without their DNA the research impossible. It… Continue Reading
What a difference for aHUS today
This is the fifth Rare Disease Day that the aHUS patient advocacy group has participated in. Back in 2012 most of the issues facing those with rare diseases were impacting on aHUS patients. The key issue was that research had produced a treatment but not all in the UK could access it. Today there is… Continue Reading
TWEET CHAT ABOUT RARE DISEASE, RESEARCH AND aHUS
Tomorrow is Rare Disease Day. @ahusallianceact in conjunction with #whywedoresearch are hosting a Tweetchat about Rare Disease Reseach and featuring aHUS. If you can listen in or join in the chat by following on #whywedoresearch account and mentioning @ahusallianceact to get a response. @ahusukvoice will also be participating. The chat will take pace between 2pm and 3pm… Continue Reading
Changes to Specialised Services- aHUS a leader
The media has featured a number of stories of changes taking place in the provision of specialised services and access processes to new treatments, including changes to the role of NICE in England. An article in The Guardian (click here) illustrates the response from some charities, who are a part of the Specialised Healthcare Alliance… Continue Reading
UK aHUS NEWS UPDATE
The aHUSUK newsetters were a part of the work of that charity before it ceased to be . Answers for aHUS will continue keeping aHUS patients up to date. This blog news item covers several current topics. Rare Disease Day 2017 28 February will be Rare Disease Day this year and its theme is ”… Continue Reading