A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

Updates  from the aHUS Centre

Updates from the aHUS Centre

The second news letter is being sent out from the aHUS team at Newcastle upon Tyne. A copy can be read below click on “May 2017”

May 2017

There is news about the Centre’s services, including twice monthly clinics for any one in England, information about the Centre’s team as well updates on fundraising activities for Answers for aHUS.

There is also some explanation why a google search for “aHUS” brings up the issue of “Alabama Rot”  !!!

As well as breaking news that at least one aHUS patient has been recruited to the ALXN 1210 drug trial. For now this can only be trialed on new onset aHUS patients.

This drug still has the active ingredient eculizumab, but it has been modified to last longer; probably there will be an interval of 8 weeks between infusions. There is no information about the price of this version of eculizumab; but let us hope that the opportunity is taken to substantially improve cost effectiveness, so that more aHUS patients can benefit when needed for as long as is needed.

 

 

Answers for aHUS momentum returns

Answers for aHUS momentum returns

After a period of relative inactivity Answers for aHUS has regained momentum  this week. Firstly it was invited to a meeting with NICE in London to give views on how NICE might be better at publishing its guidelines in a more readable and understandable format. This was how it announced the Eculizumab for aHUS decisionContinue Reading

aHUS Research in Salford

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. ItContinue Reading

What a difference for aHUS today

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 isContinue Reading

TWEET CHAT ABOUT RARE DISEASE, RESEARCH AND aHUS

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 3pmContinue Reading

Changes to Specialised Services- aHUS a leader

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 AllianceContinue Reading

UK aHUS NEWS UPDATE

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

EQUITY FOR VERY RARE DISEASES – SCOTTISH REVIEW REPORTS

EQUITY FOR VERY RARE DISEASES – SCOTTISH REVIEW REPORTS

aHUSUK had been a participating stakeholder in the review of the process for approving new medicines in Scotland called for by the Scottish Government ( a few days  before eculizumab was evaluated by the SMC!). Previous aHUSUK reports on progress of the review can seen by clicking here and here. The Review was led byContinue Reading

aHUS treatment in Wales, Northern Ireland (and Scotland) world class too.

aHUS treatment in Wales, Northern Ireland (and Scotland) world class too.

Whilst it is known that aHUS Patients in Wales and Northern Ireland have had access to eculizumab when they need it, Answers for aHUS, and before it aHUSUK ,were not told anything to confirm it in writing. So Answers for aHUS asked the question of the internet and got these answers which appeared in theContinue Reading

Average aHUS Patient Grows Older

Average aHUS Patient Grows Older

Nearly two and half years ago aHUSUK featured a blog item about the average aHUS patient and this is an excerpt of what was written then : “From the information in the database* it would seem the average aHUS patient is about 25 years old, having been diagnosed with aHUS about 5 years previously ,Continue Reading