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The People
​of ​RARE


- THE PEOPLE OF RARE -

To drive progress in the field of rare disease it requires the skills of a vast many professional organisations. There are big pharma and biotech, research and scientific institutions, medical centers and charities both big and small.  Some are vast conglomerations, small start-ups or wholly voluntary run organisations, they all play a vital role in helping us turn the tide for rare disease.

​But who are the people behind these brands? 
Who are the beating hearts who are making their mark on the work of rare disease?

- CEO SERIES -

Getting to know the CEO's at the helm of some of the RARE communities most influential organisations
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Neil Davie
(Pharmaceutical)
Dr Thomas Rossi
(Biotechnology)
Con Hennessy
OpenApp

(Healthcare technology)
Daniel Lewi
The CATS Foundation

(Charity)
Elin Haf Davies
Aparito

(Patient generated data)
Debra Miller
CureDuchenne

(Charity)
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Helen Springford
Illingworth Research Group

(Patient-centric service provider)
Alex Evans
RAREiTi

​(Managed Access Platform)
Durhane Wong-Rieger
Canadian Organization for Rare Disorders (CORD)

​(Charity)
Kristine Hoestermann and Theresa Thomas
RARE.

(
Apparel & Clothing)
Laura Helms Reece
Rho

(Health data)


Jeff D'Angelo
The CHAMP1 Research Foundation

(Charity)
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Patrick Howie
MediFind

​(Health data)
Thomas Ogorka
​Orphan Reach

(Full-service CRO)
Eric Dube Ph.D.
Retrophin

(Biopharmaceutical company)
Jamie O'Hara
HCD Economics

(Health economics)
Rob Long
Uplifting Athletes

​(Charity)
Toni Mathieson
Niemann-Pick UK

(Charity)
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Tim Guilliams
Healx

(Technology - AI)

Mike Klein
Genomenon
(Technology - genomics)
Maria Picone
TREND Community
(Technology - real-world data)
Kimberly Haugstad
​Global Genes

(Not for profit organisation)
Karim Smaira
​Genpharm

(Pharmaceutical and market access consultancy)
David Jacob
ThinkGenetic

(Not for profit organisation)
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​Becky Jenner
Rett UK

(Charity)
​Sandy Royden
OPEN Health

(Corporate - Communications and Medical Access)
​​Rick Thompson
FINDACURE

​(Charity)

Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease content
Contact Us
Editor:  
   editor@rarerevolutionmagazine.com
​Advertising: rstewart@rarerevolutionmagazine.com

  • Home
  • Rare Revolutionaries
    • Our Charity Partners
    • Revolutionaries Community
    • Join the Rare Revolution - Charities sign-up
    • Our Corporate Friends
  • Blog
  • Back Issues
  • #RareYouthProject
    • RYP Blog
  • The People of RARE
    • CEO Series
  • APP & Downloads
  • Media