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CTMA UK
Rare disease patients becoming rarer in the USA.
Article No. 427 15 April 2021 It is not surprising that people are confused by rare disease definitions and terms, the…
Charmed Moments
Atypical HUS families may not live ‘charmed lives’ - but those affected by this rare disease can deliberately choose to create small ‘Charmed Moments’ each day. Given the uncertainties aHUS brings to our patients and their families, a look at cultivating actions and selecting choices to react to life’s circumstances and aHUS realities.
Experiencing aHUS – Viewpoints & Variations
Article No. 425 30 March 2021 Dealing with the rare disease atypical HUS is difficult, for both patients and for those…
aHUS and COVID 19 Vaccine Update Update
Article No. 424 19 March 2021 COVID 19 vaccine supplies are being hampered around the world because of uncertainty about a…
aHUS uncertainty is a certainty
Article No. 423 16 March 2021 Update: Seven days after this news blog was published a further report on the ravulizumab…
aHUS Relapse: The Ties that Bind
Atypical HUS Relapse -The Ties that Bind, the third in our original series about aHUS as a lifelong challenge faced by families with a history of this rare disease.
Update: aHUS Diagnosis Process Study
Article No. 421 1 March 2021 There is no doubt that with the response by the aHUS Patient community to the…
aHUS Relapse: Expect the Unexpected
Atypical HUS Relapse: A Family View. Second in a 3-part series about how one family experienced the challenges of having this rare disease recur after many years 'off treatment.
Being An aHUS Trialist
Article No. 419 16 February 2021 It is spring time in 2017. You feel very unwell, very poorly. It is thought…
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