News & Blogs - Page 48 of 82 - aHUS Alliance Action

Global aHUS Registry: What’s it all About?

Post author:ahusalliance
Post published:January 23, 2020
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An article on FAQ regarding the aHUS global registry, including information gathered by atypical HUS patient advocates who represent the patient voice at the registry's Scientific Advisory Board meetings.

Spotlight on Ravulizumab 1- Dosing

Post author:ahusalliance
Post published:January 21, 2020
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Article No. 311 21 January 2020 Information about Ravulizumab cwvz has featured regularly on the alliance website during its development to…

Some new ERKNet News

Post author:ahusalliance
Post published:January 16, 2020
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Article No. 310 16 January 2020 The alliance has featured ERKNet in several news articles in recent years. ( Note :…

Not the one and only in 2020

Post author:ahusalliance
Post published:January 10, 2020
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Article No. 309 10 January 2020 At the end of next month it will be Rare Disease Day 2020. ”So what!?”…

Transitioning Teens to Adult Nephrology Care

Post author:ahusalliance
Post published:January 5, 2020
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As children with kidney disease grow to become adolescents, their medical care often changes from a pediatric to adult nephrology care setting - what common issues for teen patients surround this transition? A look at social, emotional, and medical aspects.

aHUS project for Rare Disease Day 2020

Post author:ahusalliance
Post published:January 2, 2020
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Atypical HUS: 2020 Rare Disease Day project by the aHUS Alliance. What do aHUS patients & family caregivers ‘see’ as needs for improvement or envision as future advancements for aHUS through 2020?