From aHUS conference attendee to presenter
The journey of the Reluctant Advocate moves along in 2015. Just after the Paris meeting of the alliance I was contacted…
YOU ARE NOT ALONE, WE CAN FIND A WAY
Along with the simple messages "you are not alone" and "we can find a way" on Rare Disease Day 2019 The Global aHUS…
A Journey for Life
Another chapter from the Reluctant Advocate From its beginning aHUSUK had not been a fundraiser. We had always told people who…
Iowa and Paris in a week- jump for joy
A big step in the Reluctant Advocate's journey. As previously pointed out aHUSUK outreach was extending due in the main to…
Nice decision just world class
More from the reluctant advocate. The July meeting of NICE left us worried. The meeting had been held on 23rd July…
Finding Baby Bodmer- Learning about aHUS
Another pathway for the reluctant advocate. All aHUS Patients and their families have had their own aHUS experience. When it hit…
If we can be of help, help patients.
By May 2013, after nearly three months of campaigning by the “few” and getting the issue to the attention of the…
Good will come together?
Some key issues exist for atypical HUS patient groups regardless of national borders, which launched the aHUS Alliance on 2013 Rare Disease Day, 28 February. How momentum among nations impacted aHUSUK recognition that atypical HUS advocacy collaboration brings new focus: good will come together.
ERKNET: aHUS and transplants
ERKNET’s website hosts a programme of webinars ( live talks over the internet) about Rare Renal Diseases . The talk today…