A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

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. It will be important that patients are properly and ethically counselled before they make a decision to take part.

The Genomics project is being used for a number of aHUS studies ,which Answers has been told about, and is a major research resource for those with Rare Diseases.

It is one of three databases that aHUSUK and Answers has supported, see registries page here.

 

 

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

IN THE CENTRE OF THE CENTRE

IN THE CENTRE OF THE CENTRE

From the moment it was formed, aHUSUK supported the setting up an aHUS Expert Centre for aHUS. Indeed one has existed, albeit as a temporary arrangement within NHS England since the time that AGNSS recommended it should be created. AGNSS was not just about evaluating eculizumab. In May this year NHS England finally chose theContinue Reading

Answers for aHUS gets going

Answers for aHUS gets going

A member of each of four of the two hundred or so families affected by aHUS in the UK attended ,in person or by teleconference,  the first meeting of Answers for aHUS. Along with representatives from  the “expert centre” in Newcastle and Kidney Research UK  the meeting discussed what might be needed to continue theContinue Reading