Last month the aHUS alliance in partnership with Andrew Siedlecki , the USA National Coordinator for the aHUS Registry and other eminent clinicians from the Boston hospitals held a symposium about aHUS and TMA in the Harvard Medical School Conference Centre .
It was a day long symposium and was recorded for those who could not be there. The recording has been edited into “watchable” chunks to be seen over a longer interval when time permits.
The videos reflect the “holistic” agenda and a “patients included” presentation style not tried before.
It will be hard to watch these videos and not think differently about aHUS after doing so.
The first video sets the scene for what follows. The alliance was honoured to have Dr Joseph V, Bonventre , Chief of the Renal Unit and Director of the Bioengineering Division at the Brigham and Women’s Hospital to officially open the conference . Followed by Len Woodward of the aHUS alliance and Dr Andrew Siedlecki who explained the purpose and format of the symposium.
“Welcome” video click here
The second video begins with three patient testimonies about aHUS diagnosis by Megan from USA, Michael from Canada and Emma from UK before Dr Jean Francis talks about the way in which Boston Hospitals have redesigned their TMA diagnosis process through team working and networking.It offers much hope for future aHUS patients.
Dr. Jean Francis was a co-author of recent research on a team approach to TMA. Lead author CE Gordon, who also presented at the TMA symposium hosted by the aHUS Alliance 24 Aug 2017. Gordon CE et al. Thrombotic Microangiopathy: A Multidisciplinary Team Approach. Am J Kidney Dis. 2017 Jul 15.
“Teamworking” video click here
Hematologists approach thrombotic microangiopathy diagnosis differently than nephrologists, as their specialty focuses on blood-based medical issues rather than the kidneys. Since atypical HUS can affect multiple organs and can impact different systems throughout the body, Dr Nathan Connell presents Atypical HUS as a Thrombotic Microangiopathy: A Hematologist’s Perspective. Patient experiences frame Dr. Connell’s presentation, with three patient testimonies about aHUS diagnosis by Megan from USA, Michael from Canada and Emma from UK.
“aHUS as a TMA: A Hematologist’s Perspective” video click here
The fourth video begins with patient speakers introducing themselves and talking about their diagnosis and when they heard about TMA, Dr Joel Krier then talked about an aHUS patient with a C3 significant variant who presented with aHUS is an unusual way with painful blue toes. It demonstrates the investigations needed to get to a diagnosis and how family history helped.
C3 and blue toes video click here
The fifth video is a tribute to those who have not survived an encounter with aHUS. Jeff from aHUS Rest of the World , an alliance affiliate, reads out a letter message from the family of an aHUS patient who recently died.
Tribute video click here
The sixth video is about aHUS secondary to pregnancy. It features Megan who also recently featured in an alliance blog in a conversation with Prof. Fadi Fakhouri. The talk by Dr Craig Gordon brings the topic right up to date.
Pregnancy and aHUS video click here
Atypical HUS Clinical Channel – YouTube
Presentations from researchers and clinicians from around the world, plus conference video from clinicians presenting at aHUS patient organizations, hosted by the aHUS Alliance global action team.
NEW – All video from the 24 August 2017 TMA symposium gathered on one playlist.
“PLAYLIST” Click here for all 9 videos from the TMA symposium hosted by the aHUS Alliance global action team on 24 Aug 2017 in Boston. (Release dates range: 12 to 24 Sept 2017)
Learn more about this event, a unique collaboration that incorporated the aHUS patient voice in all aspects and at all stages of the:
Thrombotic Microangiopathy Symposium: Through the Lens of Atypical HUS