Rare Disease Advocacy World

 

Rare Disease Advocacy World, Wednesday 24 April 2024

Darlene Shelton
Rare Disease Advocacy World
11:24

Chair's Remarks

Darlene Shelton, President/Founder, Danny’s Dose Alliance
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

Finding a mentor in the clinic to patient valley of death

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

Durhane Wong-Rieger
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 Diseases & Rare Diseases International
Panel discussion
Rare Disease Advocacy World
15:40

Pediatric to adult healthcare transition - continued care

Nathan Grant, Researcher, Medical Student; President and Founder, Harvard Medical School; Siblings with a Mission
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: 27/Mar/24 15:36

 

 

Get Involved At World Orphan Drug Congress USA

 

To Sponsor Or Exhibit

 
 

Justin Franks
justin.franks@terrapinn.com
t/ +1 914 819 3506

 

 

 

To Speak

 
 

Gina McHugh
gina.mchugh@terrapinn.com
t/ +1 646 619 1775

 

 

 

Marketing & Press Opportunities

 
 

Kaylie Brogan
kaylie.brogan@terrapinn.com