Rare Disease Advocacy World
Rare Disease Advocacy World, Wednesday 24 April 2024
Rare Disease Advocacy World
11:24Chair's Remarks
Julie Breneiser, Executive Director, Gorlin Syndrome Alliance
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
Michael McGinn, Founder, CureLBSL
Rare Disease Advocacy World
12:05Towards a World Health Assembly Resolution on Rare Diseases
Alexandra Heumber Perry, Chief Executive Officer, Rare Diseases International
Rare Disease Advocacy World
12:25Advocacy journey and policy partnerships
Daniel Wainstock, Researcher and Rare Disease Advocate, PUC-Rio
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
Dave Pearce, Chair, International Rare Diseases Research Consortium (IRDiRC)
Rare Disease Advocacy World
14:59Chair's Remarks
Darlene Shelton, President/Founder, Danny’s Dose Alliance
Rare Disease Advocacy World
15:00Challenges 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
Jida El Hajjar, Executive Director,, ALS Action Canada
Cynthia Cassandro, Vice President, Patient Advoacy, Vigil Neuroscience
Rare Disease Advocacy World
15:20Breaking barriers: Gene therapy access for neurodegenerative patients
Sulagna Bhattacharya, Chief Executive Officer, Nanoscope Therapeutics
Samarendra Mohanty, Founder-President, Chief Scientific Officer, Nanoscope Therapeutics
Rare Disease Advocacy World
15:40Pediatric to adult healthcare transition - continued care
Nathan Grant, Researcher, Medical Student; President and Founder, Harvard Medical School; Siblings with a Mission
Kristin McKay, President and Executive Director, Project Alive
Rare Disease Advocacy World
16:00Mental health and rare diseases: Mental health is part of total health
Frank Rivera, President, Stronger Than Sarcoidosis
Rare Disease Advocacy World
16:20The importance of being believed: Medical gaslighting in the rare disease space
Lara Bloom, President and CEO, The Ehlers-Danlos Society
last published: 18/Apr/24 22:05
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