A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

Category Archives: Featured

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

OPT OUT ORGAN DONOR PETITION RESPONSE

OPT OUT ORGAN DONOR PETITION RESPONSE

A petition seeking an opt out organ donor system in England, as has been adopted in Wales, has reached sufficient numbers to warrant a Government response. Below is a copy of that response sent to petitioners: The Government has responded to the petition you signed – “All UK residents to be placed on the OrganContinue Reading

A UK  PATIENT’s AGENDA FOR aHUS RESEARCH

A UK PATIENT’s AGENDA FOR aHUS RESEARCH

In the 2016 aHUS Global Survey undertaken earlier this year there were 42  UK aHUS patients or carers participants out of a total of 233. UK replies far exceeded the rest of European countries replies combined with  42 out  72 coming from UK respondents, which demonstrates the interest and willingness of the UK aHUS communityContinue Reading

HELLO FROM “Answers for aHUS”-  FOR THE FEW BY THE FEW

HELLO FROM “Answers for aHUS”- FOR THE FEW BY THE FEW

From today this website* belongs to Answers for aHUS . Answers for aHUS is a aHUS community group for all affected by aHUS in the UK . Not a charity in itself, and not a registered membership based organisation. It will have a “committee” to steer this project for the four years agreed with KidneyContinue Reading