Atypical HUS Fact Sheets (released Sept 2018) provide aHUS -specific research and info about the rare disease atypical Hemolytic Uremic Syndrome or aHUS. Available in 2 formats: an 'In Brief' print friendly pdf, and a full length version (17 page) with links to current atypical HUS research (with citations) and key topics of interest to physicians, aHUS patients, and their families.
ERKNET’s website hosts a programme of webinars ( live talks over the internet) about Rare Renal Diseases . The talk today…
Atypical HUS and School: Information about teaching & learning. Learners of any age may be affected by chronic illness or a rare disease like aHUS. What schools and employers should know about people living with atypical hemolytic uremic syndrome (aHUS)
As aHUS Awareness Day approaches it is timely to be aware of developments in the next version of eculizumab , the…
Nicolas Mullier of AIRG France has announced that a book about aHUS has been published. Nicolas tells about the book and…
Grande nouvelle !!! Le livret AIRG sur le Syndrome Hémolytique et Urémique Atypique (SHUa) est enfin arrivé !! Nous l’attendions depuis…
Thoughts of a global event for aHUS arose at the first meeting of the alliance in Barcelona in 2013. Eventually they developed into aHUS Awareness Day.
First held on 24 September 2015 it has become an annual event. It falls a month from now on Monday 24 September.
The vision of the aHUS alliance is that “good will come together”. The alliance came about because some people thought that there were things that could be better done together than alone. The vision, states that a “good” outcome is sought for all affected by, and living with, aHUS. It recognises that it is more likely to come by acting together. The vision is about togetherness. Sometimes working together is easier said than done in reality.
A highly respected English advocate for kidney patients , the late Dennis Crane MBE , once said if each of us did a little , all of us would do a lot. This exemplifies what the aHUS community can do on its awareness day.
It is not a global competition, it is not even a globally coordinated activity, it is the sum of many people doing different things in different countries. But really acting together on one day.
It is driven by a shared optimism of everyone participating that good can come someday wherever an aHUS patient may live. The optimism exists . There is no need for a paid motivational speaker to express it.
There is no limit to who is involved or what people are going to do to raise awareness in their locality. Even the locality has no limits if the event is shared via the alliance and national organisation’s social media. The reach achieved could be multifold. Use the hashtags #aHUS24Sept and/or # SHUa24Sept and @aHUS24Sept on Twitter for example.
The alliance offers a shared project in the Awareness Day video it will be producing ( click here to see the results ) .
The awareness day image of the red balloon symbolising everyone rising above aHUS says it all.
Many balloons will show our shared optimism on our day.
Qu’est-ce que le syndrome hémolytique et urémique atypique: SHUa? Vivre avec la maladie rare SHU atypique – En connaître les bases. www.aHUSallianceAction.org
“It’s BLOODY scary!”- An authentic aHUS Patients' Voice By Christmas 2011 nothing had been heard from the NHS about what format…