In the midst of all the Awareness Day and other activities changes are taking place to move from aHUSUK to Answers for aHUS. As part of this the website is to be re structured with new content for Answers for aHUS and to keep some of the aHUSUK archive available and visible. It will take… Continue Reading
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A UK website about atypical Haemolytic Uraemic Syndrome (aHUS)
Author Archives: aHUSUK
24 September 2016 aHUS Awareness Day -Some aHUS facts
Click on fact image in ascending order: … Continue Reading
NEARING THE END OF AN ERA
At the time of the report about the Final AGM of aHUSUK it had to be place on the Rare Connect platform as our our website was out of action because of service provider 123 REG . So as we approach the end of an era and for sake of completeness of a record of… Continue Reading
Man’s inhumanity to man- where is the line drawn?
Some people might say, after hearing politicians in Scotland yesterday talk about the inhumane way EU people living in the UK are being treated by not guaranteeing them the right to stay, that if one of the 178,000 people living in Scotland onset with aHUS right now, they would have no right to live, or… Continue Reading
aHUS Awareness Day – Global Video Arts Project
It is less than 50 days to go to aHUS Awareness Day 2016. As last year, aHUSUK will be supporting it in a number of ways and more information will be sent out soon. One announcement has been made about a Global Video Arts Project being coordinated by the aHUS alliance to bring together aHUS… Continue Reading
Review of access to medicines in Scotland Update and Discussion.
Last Friday aHUSUK attended the second stakeholders meeting of the Review of the Access to Medicines in Scotland . Led by Dr Brian Montgomery the meeting was designed to update and report on emerging issues and to seek further input. The scope of the review is defined by nearly two pages of criteria and it… Continue Reading
aHUS Webinar – The Movie 2
The aHUS alliance and Rare Connect have released the video of last week’s Global aHUS Webinar . It can be seen by following this link The overall time to watch is around 1.5 hours . There are brief talks by Robert Pleticha of Eurordis and Linda Burke of the Foundation for atypicalHUS and then Dr… Continue Reading
aHUS on the Web – a global discussion about aHUS
On 21 June there will be a Global Webinar hosted by Rare Connect and introduced by the aHUS alliance. The main feature will be a talk by Dr Christoph Licht about the key issues facing aHUS families around the world. Dr Christoph Licht It will start at 4 pm UK time and depending on questions… Continue Reading
aHUS Awareness Day 2016
International aHUS patients organisations agree to hold another aHUS Awaeeness Day in 2016. The date is the same as last year 24 September but it will fall on a Saturday. The emblem for 2016 is a red balloon rising above aHUS. An aHUS awareness day is designed for all affected by aHUS to raise awareness… Continue Reading
Where is our Expert Centre? NHS ENGLAND say “NEWCASTLE”
It is difficult to grasp now, but the idea of an an expert centre to deliver a Specialised Service was a part of the AGNSS review which begun in 2011. Nearly 5 years on and after an extend interim arrangement, which because of its very nature could not be all that an established set up… Continue Reading