Pathways of Patient Engagement – 4 Myths of Rare Disease Advocacy: Part 3
4 MYTHS of Rare Disease Advocacy: Digging deeper into Common Misperceptions Pathways of Patient Engagement & Recruitment…
Does the aHUS alliance add value?
Adding value in patient advocacy is obvious. Or is it? Those involved in patient advocacy constantly ask themselves “Am I achieving…
4 Myths of Rare Disease Advocacy: Part 2
The SECOND Article in a Four Part Series Rare Disease Advocacy: Digging deeper into Common Misperceptions Although there…
Transplantation and aHUS – a top topic
Transplantation of aHUS dialysis patients is a priority and top topic for the aHUS alliance. Transplantation of those with aHUS has…
Atypical HUS – Rare Disease Day 2018
Rare Disease Day will be marked around the world on 28 February 2018 and the aHUS Alliance is pleased to announce…
The aHUS Registry Explained (Part 1)
From its beginning the aHUS alliance’s website has featured articles about the aHUS Registry and the work it does (click here…
TMA 65 YEARS OLD TODAY
It was 65 years ago to day that Prof Symmers taught the world to say TMA. Prof Symmers, or Professor William…
Bucharest – Nephrology Course, Nov 17-18: IPNA & SEPNWG
International Nephrology Conference in BUCHAREST, Romania 17 & 18 Nov 2017 In the 1st conference of this type…
aHUS “How To” – Find Atypical HUS Research
It can be a struggle to find information about medical conditions if you’ve been diagnosed with a rare disease, and…