Rare Disease Advocacy World
Rare Disease Advocacy World, Wednesday 24 April 2024
Rare Disease Advocacy World
11:24Chair's Remarks
Rare Disease Advocacy World
11:25The Intersection of sports and science: Creating a better world for people impacted by rare diseases
Robert Long, Executive Director, Uplifting Athletes
Rare Disease Advocacy World
11:45Preparing for the valley of death in drug development
Rare Disease Advocacy World
12:05Towards a World Health Assembly Resolution on Rare Diseases
Rare Disease Advocacy World
12:25Advocacy journey and policy partnerships
Rare Disease Advocacy World
12:45Valuing rare disease treatments in healthcare: Real experience, real impact
Richard Chapman, Chief Science Officer, Innovation and Value Initiative
Rare Disease Advocacy World
13:05International Rare Disease Research Consortium (IRDiRC): A multi-stakeholder approach to understanding the needs in developing Rare Disease diagnostics and therapies
Rare Disease Advocacy World
14:59Chair's Remarks
Rare Disease Advocacy World
15:00Challenges of diagnosing and treating rare diseases in adult patients
Moderator: Durhane Wong-Rieger, President, Chief Executive Officer & Chair, Canadian Organisation for Rare Disorder & Rare Diseases International
Jida El Hajjar, Executive Director,, ALS Action Canada
Rare Disease Advocacy World
16:00Mental health and rare diseases: Mental health is part of total health
Rare Disease Advocacy World
16:20The importance of being believed: Medical gaslighting in the rare disease space
last published: 24/Apr/24 15:45
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