A Patients and Families Support Group

A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)

What is happening at the aHUS Expert Centre?

What is happening at the aHUS Expert Centre?

The National Renal Complement Therapeutics Centre has been up and running for over a year now. It has moved into premises in the Old Children’s Building on the Royal Victoria Infirmary site in Newcastle upon Tyne.

 

Led by, the now ,Professor David Kavanagh ,the team has reached full complement to tackle Complement in renal disease, and not just aHUS.

Answers for aHUS has heard about what has been happening, and what is about to happen at the Centre.

Firstly after a year of operating  David Kavanagh is keen to establish a “Patients Panel” of 10 or 12 people from around the UK who have had experience of the service provided by the Centre . A meeting at the Centre is being planned in late September to bring together volunteers to join the panel and represent views of patients from each of the Regions. If any reader is interested to know more about participating in the panel let Answers know by e mailing secretary@ahusuk.org, or contact the Expert Centre directly.

New patient cards to replace the aHUSUK Card  have been designed and  ready to be distributed to patients and families. In the past five years around 2000 aHUSUK cards have been given out to cover all those in families in the UK affected by aHUS. It is estimated that there are  over 50 such families!

Similarly the Centre’s website has been designed and produced and is ready to go live. The website has pages to answer questions for patients; as well as for clinicians and includes a portal for emergency contact. In time it will be linked to the existing Rare Disease Group for aHUS pages on the Rare Renal website ,which is where diagnosis and treatment protocols for aHUS currently reside.

The Centre has conference facilities,hosts seminars and symposiums and receives visitors from the UK and abroad. The featured image is of a recent aHUS Nurses Day, which involved nurses from around the UK who have contact with aHUS patients.

 

 

There are plans to hold “road show” meeting in the Regions to bring together patients to learn more about their illness and its treatment including the part played by the aHUS Expert Centre at the National Renal Complement Therapeutics Centre.

All this together with news shortly about the imminent start of the Withdrawal from Eculizumab study illustrates that a lot is happening for aHUS patients in the UK, and  with more to follow at the aHUS Expert Centre. aHUS is an awful rare disease as we know only too well;but in the UK we are now well served by our NHS and are more fortunate than many with rare diseases and others with aHUS around the world.

 

Newcastle Bridges Walk 11 June 2017

Newcastle Bridges Walk 11 June 2017

The third walk across the Tyne Bridges will be held a week on Sunday. What started off in 2015 as an aHUS event with a small team of aHUS walkers ,see picture above , has been adopted by Kidney Research UK to broaden the fundraising appeal. A chance to be on the Tyne Bridge andContinue Reading

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 activitiesContinue Reading

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