Presentations were videotaped, and appear on
YouTube on the aHUS Alliance Atypical HUS Clinical Channel .
(These were the key assets for aHUS Awareness Day: 24 Sept 2017)
As it Happened: Visit the Event Live Blog
Our sincere thanks to all participants & attendees at the
Thrombotic Microangiopathy Symposium: Through the Lens of aHUS.
WATCH the 9 Presentations from the TMA Symposium at:
The aHUS Alliance wishes to thank these authors for key research used at #TMAboston:
Authors: Gordon CE, Chitalia VC, Sloan JM, Salant, DJ, Coleman DL, Quillen K, Ravid K, Francis JM
(Am Journal of Kidney Dis , Volume 70 , Issue 5 , 715 – 721, Nov 2017)
Thrombotic Microangiopathy Symposium: Through the Lens of aHUS
24 August 2017 in Boston
The agenda for the Thrombotic Microangiopathy Symposium: Through the Lens of aHUS on 24 August 2017 in Boston has been announced, featuring a robust program of physician presentations offering a multidisciplinary approach to differentiating thrombotic microangiopathies.
With special focus on the rare disease atypical HUS (aHUS), this event is hosted by patient advocates of the aHUS Alliance and will be held at the Joseph B. Martin Conference Center at Harvard Medical School* located at 77 Avenue Louis Pasteur, Boston, MA 02115. The symposium design is unique in its focus on global aHUS patient advocacy coordinated with clinical communications from diverse experts on the broader topics of thrombotic microangiopathy.
Physicians from multiple disciplines at academic centers in the city of Boston are partnering with rare disease advocates from the international atypical HUS patient community. Speakers for the event are experts in the diagnosis, evaluation and treatment of TMA with groundbreaking scientific discoveries and clinical experiences to share. Broad issues will be covered such as differentiating diagnosis among TMAs, along with varied topics to include approaches to TMA by specialists (hematology vs nephrology), genomics and impact of mutations, aHUS and pregnancy, and more. (See agenda below)
This innovative collaboration between physicians and the aHUS Alliance will offer insights from the patient perspective as well, providing the ‘Patient Voice’ and offering patient engagement to frame and add context to the medical content of the thrombotic microangiopathy symposium. Timing for this event coordinates with the 3rd annual world aHUS Awareness Day on 24 September 2017. Marked annually on 24 September, aHUS Awareness Day is dedicated to sharing information and insights into the extremely rare disease Atypical Hemolytic Uremic Syndrome and making more visible the needs and issues facing aHUS patients.
At the core of patient treatment, caregiver concerns, medical team coordination, and disease research is communication of information and issues. Join us in Boston for this free medical education event on 24 August 2017 to learn information and gain insight at the Thrombotic Microangiopathy Symposium: Through the Lens of aHUS.
Note: See our website’s initial TMA Boston article published previously, for additional background.
Download a pdf of this agenda:
Thrombotic Microangiopathy (TMA) Symposium: Through the Lens of aHUS
24 August 2017 – Boston
Joseph B. Martin Conference Center at Harvard Medical School
77 Avenue Louis Pasteur, Boston MA 02115
10.15 to 10.45 am – Reception and Registration
10.45 Welcome – Dr. Joseph V. Bonventre, Dr. Andrew M. Siedlecki, Mr. Leonard Woodward
11.00 Introduction to the TMA Boston symposium format
11:10 Patient Perspective: When did you first hear the phrase “TMA”?
11.20 A Story about Family and Genetics – Dr. Joel Krier
12.10 Patient Perspective: How long did it take to connect your symptoms with a diagnosis?
12.20 Accelerating the Pathway to Diagnosis – Dr. Jean Francis
13.10 Patient Perspective: What else did you want to know before you became pregnant?
13.20 Pregnancy and aHUS – Dr. Craig Gordon
14.00 Patient Perspective: How many specialists have you seen since you were diagnosed?
14.10 aHUS as TMA: A Hematologist’s Perspective – Dr. Nathan Connell
15.00 Patient perspective: When did you start feeling better after treatment started?
15.10 What to treat and how to treat it – Dr. Andrew M. Siedlecki
15.50 Panel Discussion
16.10 Closing Remarks – Ms. Linda Burke and Dr. Andrew M. Siedlecki
RSVP and Questions: info@aHUSallianceAction.org (Name, role, group affiliation or interests please)
Follow symposium updates with the aHUS Alliance @aHUSallianceAct
FMI: Please contact the global action team of the aHUS Alliance
Physician Chairperson for the TMA Symposium, Dr. Andrew Siedlecki
In addition to our deep appreciation for the physicians noted as speakers, we recognize and thank these aHUS advocates for participating in the TMA symposium: Megan Berry (USA), Linda Burke (USA), Michael Eygenraam (Canada), Margriet Eygenraam, (Canada), Jeff Schmidt (USA), Emma Woodward (UK), and Len Woodward (UK).
About the aHUS Alliance
The aHUS Alliance is an international umbrella group of advocacy groups and individuals dedicated to providing aHUS information, resources, and advocacy initiatives in a connected global network. Follow us on Twitter @aHUSallianceAct
* aHUS Alliance Global Action is not affiliated with Harvard University or Brigham and Women’s Hospital, nor is Thrombotic Microangiopathy Symposium: Through the Lens of aHUS a Harvard University or Brigham and Women’s Hospital program or activity. Medical staff members or other employees of Brigham and Women’s Hospital may participate in this program as faculty members; if so, they are participating on their own behalf and not on behalf of or as a representative of BWH.