The journey of the Reluctant Advocate moves along in 2015. Just after the Paris meeting of the alliance I was contacted by Prof. Tim Goodship. He thought , like I…
The aHUS Alliance shares research within specific nations, and notes the value of a global focus on the collaborative nature of atypical HUS research and of aHUS advocacy. Creating improvements in disease management, determining clinical guidelines, and deepening of the aHUS knowledge base is important within each nation – in turn this benefits global collaboration as it further builds upon such efforts.
The American Society of Haematology hosts its annual conference in San Diego from 30th November to 4th December 2018 . A search through the programme of events reveals the following…
The Dutch aHUS patients' conference is being held in Nimegen and the participants are gathering at the Fletcher Park Hotel Val Monte for the talks. The attendees are a mix…
Break down in communication flows and fragmented outreach have built barriers for research and clinical trial enrollment regarding advancing new options for those with the rare disease atypical HUS (aHUS, or hemolytic uremic syndrome). The aHUS Alliance looks at current challenges, and potential pathways to explore and engage.
Kidney Week 2018 – aHUS Alliance overview of presentations that matter to the atypical HUS community. Links to ASN presentations and abstracts on topics such as complement, kidney transplant, pregnancy, eculizumab, thrombotic microangiopathy, HELLP, aHUS global registry, and more.
Atypical HUS Fact Sheets (released Sept 2018) provide aHUS -specific research and info about the rare disease atypical Hemolytic Uremic Syndrome or aHUS. Available in 2 formats: an ‘In Brief’ print friendly pdf, and a full length version (17 page) with links to current atypical HUS research (with citations) and key topics of interest to physicians, aHUS patients, and their families.
Bergamo IT – Whistle-Stop Tour of 4 aHUS Centers in the EU: Visits to Three Nations in 6 days. The aHUS Alliance toured centers of aHUS expertise and research in July 2018. 3rd Stop: Mario Negri Institute, the Centro di Ricerche Cliniche per le Malattie Rare “Aldo e Cele Daccò”