aHUS and the Red Balloon
It is just 25 days to aHUS Awareness Day 2017 and patients and patients' organsations around the world will be making…
#TMABoston Live
Post-Event Update:Presentations were videotaped, and appear on ourAtypical HUS Clinical Channel as the key asset of 2017 aHUS Awareness Day (24…
Patients as Partners
Patients are at the heart of healthcare. Patients are the recipients of medical care, and the participants in research and clinical…
aHUS Awareness Day 2017 – Global Video Project
The 3rd international aHUS Awareness Day is just 2 months away. The world will join together on…
Complement-mediated TMA awareness- did you know it was aHUS?
Earlier this year the website featured an article ( click here )about the nomenclature used to described aHUS. Clinical articles now…
AGENDA for TMA & aHUS Symposium in Boston 24 Aug 2017
Post-Event Update: Presentations were videotaped, and appear on YouTube on the aHUS Alliance Atypical HUS Clinical Channel .…
Genetic testing for all? :Discuss
* To have genetic tests for all aHUS patients and families featured in the Rare Disease Day video ( see here).…
aHUS patients and the feeling of fatigue
There were several questions in the Rare Disease Day video about how aHUS patients feel after recovery from aHUS ( click…
How Do You Define Wellness if You’re Living with a Rare Disease or Chronic Illness?
What does the term ‘wellness’ mean if you’re a patient with a very rare disease or chronic illness? At…
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