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…
The B of the aHUS Bang ends the Rare Disease Day Video
Rares of Romania asked the question " How can I understand in simple words what is happening in my body during this…
Thrombotic Microangiopathy Symposium in Boston – 24 Aug 2017
Thrombotic Microangiopathy Symposium: Through the Lens of aHUS 24 August 2017 in Boston Post-Event Update: LIVE BLOG: At…
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