2019 Atypical HUS Fact Sheets

Atypical HUS: Fact Sheets & Research (2019 - SEPT - 2020 Edition) The aHUS Alliance provides informational resources about this rare disease for aHUS families & advocates around the world. Highlight boxes of aHUS research from the past year are provided in the full version, Key Facts and Research. The 'aHUS: In Brief 2019' version is a single page of aHUS facts to Print & Share.

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OMS721: Omeros Research Collaboration with University of Cambridge

Pharma News: an Atypical HUS update from the aHUS Alliance. In its 11 December 2018 press release, the Omeros Corporation announced a new collaboration with a UK university to create the Omeros Center at Cambridge for Complement and Inflammation Research (OC3IR). Focus of the OC3IR will be research into OMS721 and OMS906, but how will it engage other aHUS stakeholders interested in OMS721 clinical trials and atypical HUS advancements in research?

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Breaking Down Barriers in aHUS Clinical Trials

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.

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Atypical HUS Fact Sheets – Sept 2018 Editions

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.

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Third Stop Bergamo Italy and another aHUS Expert Centre

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"

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Next stop Newcastle upon Tyne Hospital

Newcastle upon Tyne UK - 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. 2nd Stop: England, the National Renal Complement Therapeutics Centre (NRCTC) and with the National aHUS Service (NHS).

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A whistle stop tour of aHUS Expert Centres

Whistle-Stop Tour of 4 aHUS Centers in the EU: Visits to Three Nations in 6 days. "What is a Centre of Excellence?" lacks clarity, and is a concern of patients, families, and advocates. On behalf of atypical HUS advocates, the aHUS Alliance toured EU centers of aHUS expertise and research in July 2018.

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