Rare Disease Advocacy World

 

Rare Disease Advocacy World, Wednesday 24 April 2024

Julie Breneiser
Rare Disease Advocacy World
11:24

Chair's Remarks

Robert Long
Rare Disease Advocacy World
11:25

The Intersection of sports and science: Creating a better world for people impacted by rare diseases

Robert Long, Executive Director, Uplifting Athletes
Michael McGinn
Rare Disease Advocacy World
11:45

Preparing for the valley of death in drug development

Alexandra Heumber Perry
Rare Disease Advocacy World
12:05

Towards a World Health Assembly Resolution on Rare Diseases

Daniel Wainstock
Rare Disease Advocacy World
12:25

Advocacy journey and policy partnerships

Richard Chapman
Rare Disease Advocacy World
12:45

Valuing rare disease treatments in healthcare: Real experience, real impact

Richard Chapman, Chief Science Officer, Innovation and Value Initiative
Dave Pearce
Rare Disease Advocacy World
13:05

International Rare Disease Research Consortium (IRDiRC): A multi-stakeholder approach to understanding the needs in developing Rare Disease diagnostics and therapies

Darlene Shelton
Rare Disease Advocacy World
14:59

Chair's Remarks

Panel discussion
Rare Disease Advocacy World
15:00

Challenges of diagnosing and treating rare diseases in adult patients

Durhane Wong-Rieger, President, Chief Executive Officer & Chair, Canadian Organisation for Rare Disorder & Rare Diseases International
Frank Rivera
Rare Disease Advocacy World
16:00

Mental health and rare diseases: Mental health is part of total health

Lara Bloom
Rare Disease Advocacy World
16:20

The importance of being believed: Medical gaslighting in the rare disease space

last published: 20/Apr/24 16:35

 

 

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