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

Pre-Congress Workshops - Monday 27th October @ 11:30

Innovation in LMICs: Overcoming Barries to Access and Advancing Global Rare Disease Solutions

Day 2 - Wednesday 29 October @ 13:45

Diagnostic Odyssey of Patients with Rare Diseases

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

P.J. Brooks, Deputy Director, Division of Rare Diseases Research Innovation, Member of IRDiRC Funders Constituent Committee (FCC), NIH/NCATS

Mary Wang, Director, Patient Engagement, Genespire

Mimi Lee, Cheif of Precision Medicine, GeneDx

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Mimi Lee / Diagnostic Odyssey of Patients with Rare Diseases

Mimi Lee, Cheif of Precision Medicine,
GeneDx

Dr. Mimi Lee serves as Chief Precision Medicine Officer at GeneDx, where she leads the company’s efforts to make precision medicine the standard of care. A physician–scientist and healthcare innovator, Dr. Lee is driving GeneDx’s vision to harness the power of genomics to predict, prevent, and...

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Day 2 - Wednesday 29 October @ 15:00

Keynote Panel: In what way can we mobilise, enable and leverage international policies around the world for PLWRDs?

-What progress has been made from WHO Resolution on Rare Diseases?

-How far are we from a Global Action Plan on Rare Diseases?

Moderator: Yann Le Cam, Founder & Past-CEO of EURORDIS-Rare Disease Europe, EURORDIS-Rare Diseases Europe

Anne-Sophie Chalandon, Head of Global Public Affairs, Rare Diseases and CGT Policies, SANOFI

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Anne-Sophie Chalandon / Keynote Panel: In what way can we mobilise, enable and leverage international policies around the world for PLWRDs?

Anne-Sophie Chalandon, Head of Global Public Affairs, Rare Diseases and CGT Policies,
SANOFI

  Anne-Sophie Chalandon works to further enhance Sanofi’s external engagement and policy shaping efforts with rare disease community. She brought a solid experience and demonstrated successes in patient advocacy and policy shaping in the rare disease space. Anne-Sophie is a major in genetic and...

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Diego Fernando Gil Cardozo, President, Enfermedades Raras en el Caribe y América Latina (ERCAL)

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Diego Fernando Gil Cardozo / Keynote Panel: In what way can we mobilise, enable and leverage international policies around the world for PLWRDs?

Diego Fernando Gil Cardozo, President,
Enfermedades Raras en el Caribe y América Latina (ERCAL)

Diego is the Executive Director of the Federación Colombiana de Enfermedades Raras (FECOER), an umbrella organisation bringing together 52 patient groups to represent the voice of the rare disease community in Colombia. Diagnosed with pulmonary hypertension over 30 years ago, Diego used his...

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

Fabienne Bartoli, Inspector General, French National Authority for Health