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…
Broader picture of aHUS and greater outreach
As 2014 progressed it was noticeable how much aHUSUK had become aware of other countries and their aHUS challenges and focuses.…
£2 billion a week and rising
The reluctant advocate journey continues. By 2014 it was not unusual for aHUSUK to get emails from news journalists from newspapers…
Here comes the sun
The Reluctant Advocate journey continues. aHUSUK formally responded to the Evaluation Consultation Document by 25 March 2014 as requested by NICE.…
A new global direction presents itself
By now followers of the Reluctant Advocate will no doubt have grasped the expansion of work that naturally occurs when running…
Finding a New Normal after Diagnosis
One mother’s personal story about her young son’s diagnosis with atypical HUS. Connected to the broader themes of what happens after a rare disease diagnosis as working parents strive to navigate, childcare, emotional stress, and family impacts.
Let the science give the answers
aHUS Patients contributed two questions to the aHUS Patients Research Agenda: 1. Is there an optimal way in which a complement…
No one said it would be easy
The reluctant advocate story continues: aHUSUK had received the Evaluation Consideration Document the week before Rare Disease Day 2014 and we…
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