Durhane Wong-Rieger | President, Chief Executive Officer
Canadian Organisation for Rare Disorder & Rare Diseases International

DURHANE WONG-RIEGER, PHD is Chair of Rare Disease International, President of Asia Pacific Alliance of Rare Disease Organizations, Treasurer of UN NGO for Rare Diseases, Chair of Patient Advocates Constituency Committee of International Rare Disease Research Consortium, and on the Editorial Boards of The Patient- Patient Centred Outcomes Research and Rare Diseases and Orphan Drugs Journal. In Canada, she is President & CEO of the Canadian Organization for Rare Disorders, the Institute for Optimizing Health Outcomes and Canadian Heart Patient Alliance. She serves on Canada’s Rare Disease Drug Strategy Implementation Advisory Group, Canada’s Rare Disease Network Steering Committee and Canada’s Newborn Screening Advisory Group. Durhane has a PhD in psychology from McGill University and was professor at the University of Windsor, Canada. She is a certified Health Coach and author of three books and many articles.

Appearances:

Day 1 - Wednesday 23 October @ 14:10

Convergence on rare disease and precision medicine – a real drive on drug development

Moderator: Durhane Wong-Rieger, President, Chief Executive Officer, Canadian Organisation for Rare Disorder & Rare Diseases International

Federica Miotto, Translational Project Manager, Fondazione Telethon

Denis Costello, Director, CML Advocates Network

Sonia VALERO, Head Of Clinical Operations - Patient Advocacy Leader, Vivet Therapeutics

Rachel Yang, Senior Advisor, Zhongshan Hospital Fudan University

Maciek Klein, Global Chief Business Officer, Saventic Health GmbH

Day 2 - Thursday 24 October @ 11:10

Panel: What are the impacts of rare designation?

Moderator: Daniel O'Connor, Director, Regulatory Policy & Early Access, ABPI

Frauke Naumann-Winter, Head of Unit, BfArM

Durhane Wong-Rieger, President, Chief Executive Officer, Canadian Organisation for Rare Disorder & Rare Diseases International

Jonathan Kornstein, Vice President, Rare Disease and Pediatrics, CAIDYA

Day 2 - Thursday 24 October @ 14:10

Panel: From global to local: partnering for patient centered policies beyond Europe

The panel aims to highlight the synergies that can be developed between the global and local levels to support policy shaping that addresses the needs of the rare disease communities and help identify what are key success factors to drive policy change locally and translate global commitments into impactful actions for PLWRD.

The panel will explore what is currently existing and what is on the horizon for rare diseases globally, and invite panellists from China, Spain, the UAE, Canada, and Brazil, as well as the audience, to share examples and reflect on how these global frameworks can be leveraged to create traction nationally and locally. The panel will also explore how we can build on local good practices existing “on the ground” within different healthcare models.

Moderator: Durhane Wong-Rieger, President, Chief Executive Officer, Canadian Organisation for Rare Disorder & Rare Diseases International

Antoine Daher, President, Casa Hunter

Roser Francisco, Head of the Clinical Accreditation Unit, Hospital Sant Joan de Déu