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a typical hemolytic uremic syndrome. DAY. 24 September. @ aHUS24Sept. www.aHUSallianceAction.org. @ aHUSallianceAct. National aHUS Patient Organizations are Paramount. aHUS Alliance provides a global P artership Platform a mong People and Organizations.
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atypical hemolytic uremic syndrome DAY 24 September @ aHUS24Sept www.aHUSallianceAction.org @aHUSallianceAct
National aHUS Patient Organizations are Paramount aHUS Alliance provides a global Partership Platform among People and Organizations Atypical HUS diagnosis done locally benefits from being confirmed centrally by aHUS expert centers. Collaboration with, and training of, local physicians (GPs) promotes accurate and rapid diagnosis for improved patient outcomes.
National aHUS Patient Organizations are Paramount aHUS Alliance provides a global Partnership Platform among People and Organizations www.aHUSallianceAction.org Atypical HUS – Global Advocacy
Veronique Frémeaux-Bacchi HôpitalEuropéen Georges Pompidou Paris, France aHUS Alliance - Whistle Stop Tour 12 to 17 July 2018 4 aHUS Expert Centres www.aHUSallianceAction.org
Veronique Frémeaux-Bacchi HôpitalEuropéen Georges Pompidou Paris, France aHUS Alliance - Whistle Stop Tour 12 – 17 July 2018 4 aHUS Expert Centres
www.aHUSallianceAction.org www.aHUSallianceAction.org
National aHUS Patient Organizations are Paramount aHUS Alliance provides a global Partnership Platform among People and Organizations www.aHUSallianceAction.org Atypical HUS – Global Advocacy
atypical hemolytic uremic syndrome DAY 24 September @ aHUS24Sept www.aHUSallianceAction.org @aHUSallianceAct
atypical hemolytic uremic syndrome A W A R E N E S S DAY 24 September @ aHUS24Sept www.aHUSallianceAction.org @aHUSallianceAct
“No matter how wonderful an orphan drug might be • in regard to its ability to save or transform patient lives, • what value does it retain • in parts of the world where market conditions or high cost • make the drug unavailable to physicians and their patients?” • aHUS Alliance • (2018 Atypical HUS Therapeutic Drug Discovery) www.aHUSallianceAction.org Atypical HUS – Global Advocacy
Happy Father’s Day to the Inspiring Men husband HUSBAND whose Strength & Love Show Love in Action In Support of Patients & Caregivers who are affected by the rare disease Atypical HUS HUSBAND HUSBAND www.aHUSallianceAction.org Atypical HUS – Rare Disease Advocacy
“Be like stars; instead of cursing the darkness, shine.”MatshonaDhliwayo www.aHUSallianceAction.org Atypical HUS – Rare Disease Advocacy
The rare disease atypical HUS is difficult to diagnose and differentiate from other types of thrombotic microangiopathy aHUS www.aHUSallianceAction.org Atypical HUS – Global Advocacy
Every wave touching upon the shore represents a challenge or experience, shaping the landscape of our lives. www.aHUSallianceAction.org Atypical HUS – Global Advocacy
Atypical HUS ADVOCATES Forged by the Fire of our Rare Disease PATIENT EXPERIENCES www.aHUSallianceAction.org RARE DISEASE – aHUS Global Advocacy
Atypical HUS ADVOCATES Forged by the Fire of our Rare Disease Exeriences www.aHUSallianceAction.org RARE DISEASE – aHUS Global Advocacy
whistle-stop[hwis-uh l-stop, wis-] AdjectiveDef. involving brief visits in a succession of places within a short period of time CONNECT INFORM COLLABORATE aHUS Whistle-Stop Tour 12 - 17 JULY 2018 www.aHUSallianceAction.org Atypical HUS – Global Rare Disease Advocacy
aHUS Whistle-Stop Tour 12 to 17 JULY 2018 ENGLAND FRANCE ITALY Together We Can Move aHUS Advocacy Ahead for all Nations www.aHUSallianceAction.org Atypical HUS – Rare Disease Advocacy
aHUS Alliance www.aHUSallianceAction.org
aHUS Alliance www.aHUSallianceAction.org aHUS Awareness Day - 24 Sept
Global Advocacy – Atypical HUS www.aHUSallianceAction.org
http://www.picunephrologycourses.com/index.php Pediatric Critical Care Nephrology & Dialysis Course – New Delhi, Aug 4-5 2018 Atypical HUS session on Day-2: 5th August (Sunday)
Atypical HUS is difficult to diagnose and differentiate from other types of thrombotic microangiopathy aHUS www.aHUSallianceAction.org Atypical HUS – Global Advocacy
Pediatric Critical Care Nephrology & Dialysis Course – New Delhi, Aug 4-5 2018 Atypical HUS session on Day-2: 5th August (Sunday) A W A R E N E S S @aHUS24Sept
Atypical HUS is difficult to diagnosis from other types of thrombotic microangiopathy aHUS With similar 24 September # aHUS24Sept Atypical HUS – Rare Disease Advocacy # SHUa24Sept www.aHUSallianceAction.org
The South Africa Pediatric Nephrology Perspective on Eculizumab for Pediatric Patients with Atypical HUS A Global Review Panel Model for aHUS Drug Access Dr Errol GottlichandProfessor Mignon McCulloch www.aHUSallianceAction.org Atypical HUS – Rare Disease Advocacy
Dr Errol Gottlich Professor Mignon McCulloch June 2018 The South African Pediatric Nephrology Perspective on Eculizumab for Pediatric Patients with Atypical HUS
Rare Disease Awareness Atypical HUS 24 September @ aHUS24Sept www.aHUSallianceAction.org @aHUSallianceAct