Article No 336
30 March 2020
Atypical HUS & COVID-19
Resources for the global aHUS Community
The aHUS Alliance has created a page of resources as an initial place for the atypical HUS community to learn more about issues surrounding this rare disease during the COVID-19 pandemic.
Recognize that every resource page for COVID-19 will lose the battle in trying to keep current with a medical crisis that is evolving on an hourly basis. Know that the volunteer team of aHUS patients and caregivers in over 30 nations is aware that we cannot possibly do justice to the steady stream of new information about COVID-19.
Still, as part of the global aHUS community we share your concerns and feel helpless to do anything meaningful in such an uncertain situation that has so many implications for us all. Many aHUS patients have concerns about the impact of COVID-19 on their health, and so we’ve creating a very basic page of resources to be found at bit.ly/aHUSandCOVID19info
Don’t think for a moment that our COVID-19 resource page for the global aHUS community will provide a complete list of all the information you should have about the pandemic – it does not, and it cannot. It is merely a curated list first formed on 30 March 2020 as snapshot in time, a reference point for assist readers looking for information about COVID-19 that is of particular interest to the aHUS community.
The aHUS Alliance cautions that new information about the coronavirus is learned on an daily basis, so aHUS patients and family caregivers are strongly advised to regularly visit their national government’s outlets for health updates, COVID-19 guidelines, and details related to infectious disease spread in their regions.
for the Atypical HUS global community
(Update intervals are noted throughout the Page)
Click title or image above to View
Ask the Doctor: Q & A about Atypical HUS and COVID-19
Webinar Video Now Available
On 24 March 2020, a webinar panel of 6 aHUS experts from the Scientific Advisory Board (SAB) of the global aHUS registry shared info and answered questions from patients and aHUS family caregivers regarding the effects of coronavirus on those diagnosed with this very rare disease.
We are extremely grateful for the physicians who shared their time and expertise as webinar presenters during the COVID-19 pandemic.
- Gema Ariceta, MD, Spain (pediatric nephrologist)
- David Cohen, MD, USA (adult nephrologist)
- Nicole Isbel, MD, Australia (adult nephrologist)
- Christoph Licht, MD, Canada (pediatric nephrologist)
- Eric Rondeau, MD, France (adult nephrologist)
- Marie Scully, MD, United Kingdom (hematologist)
Over 300 people attended the webinar in real time, and now we are pleased to announce that archived video from this ‘aHUS & COVID-19’ webinar has become available. Our thanks to Alexion for providing the IT support for the webinar.
Click the link below to watch the Video of this Webinar.
Vimeo Video Link: bit.ly/aHUS24Mar2020webinar
Click to download a pdf TRANSCRIPT of this webinar
Courtesy of the Global HUS Registry SAB (permission granted by Dr C Licht)
Page Updated 30 Apr 2020