aHUS patients and carers raised the research topic : "Can the side effects of treatment using a complement inhibitor be distinguished from those temporary and permanent ongoing ailments which follow…
The aHUS Alliance presents issues and information from varied perspectives within the atypical HUS arena. Amplifying the patient voice in over 30 countries, we present this series of original content on topics related to the rare disease atypical HUS with articles focused on key interests of patients, caregivers, physicians, researchers and other stakeholders,
Last summer an aHUS awareness article appeared in the magazine of the charity Kidney Research UK. ( see article here). Ostensibly it is about aHUS and pregnancy which is one…
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.