Today's podcast is with Tom Pulles, Head of Medical Affairs & Patient Advocacy at Ultragenyx. Tom offers key advice for medical affairs in the rare disease space: the importance of listening to the patient's voice via face-to-face interactions, considerations around setting up disease monitoring programs where patient recruitment is low, and meaningful patient outcomes. Enjoy!
This article was provided by NextLevel Life Sciences
Claudia Pereira
Senior Medical Writer
OPEN Health
Bill McNish
Senior Omnichannel Strategist
OPEN Health
Robyn Davies
Account Director
OPEN Health
Chris Rolfe
UK RWE Data and Product Manager
Open Health
Tessa Pugh
CEO
PharmaReview
Caroline Halford
Development Director for Medical Education
Springer Healthcare
David Braca
Regional Sales Director - US
Springer Healthcare
Samin Saeed
Chief Medical Officer
PharmaReview
Luke Rogers
Senior Director, Business Partnerships
Within3
Gemma Allen
Expert in Technology Innovation
Open Health
Oliver Childs
Expert in Creative Scientific Communications
Open Health
Chris Bassett
Sales Director
Springer Healthcare
Simon Fry
Digital Product Development Director
Springer Healthcare
Tessa Pugh
CEO
PharmaReview
Nina Levin
Vice President - Client Success
Within3
James Turnbull
Global Head of Omnichannel Communications
OPEN Health
Jenny Ghith
Senior Director, Omnichannel Strategy and Innovation Lead, Global Scientific Communications
Pfizer Oncology
Christina Hoffman
Global Head, Medscape Medical Affairs
Medscape Medical Affairs
Iola Forster
Strategic Competence Lead, Industry & Society Services
Karger Publishers
Geoff Covey
General Manager, Karger UK
Karger Publishers
Tim Murphy
Senior Director of Client Partnerships
Within3
Robert Groebel
Vice President - Global Medical Strategy
Monocl
Luke Rogers
Senior Director, Business Partnerships
Within3
Rosie Humphreys
Digital Communications Director
Open Health
Ignacio Medrano
Founder & Chief Medical Officer
Savana
Jessica Ingram
Senior Vice President, Learning & Development
OPEN Health Medical Communications
Sophie Officer-Thorley
Senior Account Manager - Learning and Development
OPEN Health Medical Communications
Christina Hoffman
Global Head, Medscape Medical Affairs
Medscape Medical Affairs
Steven Gomez
Solutions Design Director
Monocl
Luke Rogers
Senior Director, Business Partnerships
Within3
Robert Groebel
Vice President - Global Medical Strategy
Monocl
James Turnbull
Senior Vice President, Omnichannel & Digital
OPEN Health
Christina Hoffman
Global Head, Medscape Medical Affairs
Medscape Medical Affairs
Alessandro Pontes-Arruda
Vice-President, U.S. Medical Head Cardiovascular and Established Products
Sanofi
Gokhan Tanju
Executive Director, Business Intelligence
Medscape Medical Affairs
Luke Rogers
Senior Director, Business Partnerships
Within3
Eric Noehrenberg
President
NIPC
Luke Rogers
Senior Director, Business Partnerships
Within3
Robert Groebel
Vice President - Global Medical Strategy
Monocl
Luke Rogers
Senior Director, Business Partnerships
Within3
Gemma Allen
Head of Digital Communications
Open Health
Luke Rogers
Senior Director, Business Partnerships
Within3
Joachim Flickinger
Head of Clinical & Patient Markets
Karger Publishers, Switzerland
Iola Gulijew
Strategic Competence Lead, Industry & Society Services
Karger Publishers, Switzerland
Luke Rogers
Senior Director, Business Partnerships
Within3
Luke Rogers
Senior Director, Business Partnerships
Within3
Helen Kane
Founder & Managing Director
ONE MSL, UK
Sergio Diaz
Patient-Centred Outcomes Consultant
OPEN VIE
Amanda Pulfer
Strategic Director
OPEN VIE
Jeremy Rassen
President and Chief Science Officer
Aetion, USA
Tessa Pugh
CEO
PharmaReview, UK
William Soliman
President & CEO
Accreditation Council for Medical Affairs
Eric Bouilloux
Associate VP, Scientific Affairs - Operations
Accord Healthcare, UK
Andy Bowman
Managing Director
Within3
Jessica Ingram
Managing Director
OPEN Health Medical Communications
Mike D’Ambrosio
Senior Project Director, Real World & Late Phase
Syneos Health, UK
Pauline De Mari
Vaccines Innovative Medical Engagement Lead
Sanofi
Andy Bowman
Managing Director
Within3
Louise Picken
Senior Scientific Director
Complete HealthVizion
Helen Blomfield
Consultant
Kinapse (A Syneos Company)
Timo Schwemer
Director, Consulting
Syneos Health
Amy Pinelli
Regional Vice President, Business Partnerships
Within3
Robert Groebel
Vice President - Global Medical/KAM Strategy
Veeva Systems
David Thompson
Senior Vice President Real World and Late Phase
Syneos Health
Ian Greenway
Medical Affairs Director
Complete HealthVizion, UK
Charlotte Moseley
Global Head
Complete HealthVizion, UK
Gavin Kenny
Account Director
OPEN Health Medical Communications, UK
Angela Rylands
Principal Consultant Patient Centred Outcomes
Open Health, UK
Erwin De Cock
Principal, Real-World & Late Phase
Syneos Health
Gemma Pfister
Executive
Vynamic, UK
Tessa Pugh
Director
PharmaReview, UK
Peter Gannon
Senior Vice President, Business Partnerships
Within3
Amanda Pulfer
Managing Director
PH Associates
Torkild Stenbock
General Manager
LINK Medical Research, Norway
Marc Pignot
Director Real World Research Consulting
Kantar Health, Germany
Erwin De Cock
Principal, Real-World & Late Phase
Syneos Health
Pamela Peters
Szenior Director, Medical Affairs Strategic Solutions
Medscape
Gemma Allen
Senior Digital Communications Lead
Succinct Medical Communications
Robert Poole
Director of Scientific Services
Complete HealthVizion
Stephen Allison
Business Development Director
Complete HealthVizion, UK
Lance Hill
CEO
Within3
Anthony Page
CEO
Voxx Analytics
Pamela Peters
Senior Director, Medical Affairs Strategic Solutions
Medscape
William Soliman
President & CEO
Accreditation Council for Medical Affairs
Pamela Peters
Senior Director, Medical Affairs Strategic Solutions
Medscape
Michael Kirby
Vice President, Business Partnerships,
Within3
Robert Honigberg
Sr. Medical Director, Medical Affairs
Flexion Therapeutics
Badal Shah
Managing Director, Health Analytics
QPHARMA
Annie Rankin
Client Partnerships Lead
Succinct Medical Communications
Gavin Kenny
Account Director
Succinct Medical Communications
Katie Corbin
Managing Director
Succinct Medical Communications
Richard Jones
Patient Services Director
The Earthworks (an OPEN Health Company)
Louise Picken
Senior Scientific Director
Complete HealthVizion
Robert Poole
Director of Scientific Services
Complete HealthVizion
Giovanni Fiori
Managing & Scientific Director
MediNeos
Leanne Larson
Corporate VP, Observational Research
PAREXEL
Richard Macaulay
Principal Consultant, (Pricing and Market Access)
Parexel, UK
Maryna Kolochavina
Project Director, Real World & Late Phase
Syneos Health
Tessa Pugh
Director
PharmaReview, UK
William C Maier
Chief Scientific Officer and Head of Patient-Centered Sciences
Mapi Group
Ian Greenway
Medical Affairs Director
Complete HealthVizion, UK
Rhiannon Meaden
Head of Commercial Development
Complete HealthVizion, UK
Radek Wasiak
Vice President, Meta Research & Real-World Evidence,
Evidera Inc., UK
Stuart McCully
VP Late Stage
INC Research/inVentiv Health, UK
Alexandre Malouvier
Director of Scientific Affairs, Late Phase Services
PRA Health Sciences, UK
Celeste Kolanko
Managing Director
Liberum IME, UK
Leanne Larson
Corporate VP, Observational Research
PAREXEL
Oliver Leatham
VP Heron Commercialization
PAREXEL
William C Maier
Chief Scientific Officer and Head of Patient-Centered Sciences
Mapi Group
Sital Kotecha
Director, Medical Strategy
Veeva Systems, UK
Tim Day
Principal
Innovative Strategic Communications
Robert Groebel
Vice President - Global Medical Strategy
Veeva
Brian Harper
Senior Director, Medical Content Strategy
Veeva
Gillian Boucher
Director, Medical Writing and Editorial
Quintiles
Sanjay Singhvi
Director
System Analytic, UK
Louise Parmenter
Global Head of Operations, Epidemiology & Outcomes Research
Real-World & Late Phase Research
Quintiles
Gijs Hubben
CEO
BaseCase, Germany
Keith Morris
Vice President, Medical Affairs
Campbell Alliance, USA
Sital Kotecha
Medical Strategy Director, Europe
Veeva Systems, UK
Tim Day
CEO & Principal
Innovative Strategic Communications, USA
Alistair MacDonald
Executive Director, Real World Strategy
INC Research, UK
Leanne Larson
Vice President and Global Head, Observational Research
Parexel, USA
Oliver Leatham
Vice President and Head, Pricing and Market Access
Parexel, UK
Dominic Sloane
Development Director
Adelphi Communications, United Kingdom
Sital Kotecha
Medical Strategy Director, Europe
Veeva Systems, UK
Karen Wai
Vice President, Regional Managing Director Real-World & Late Phase Research, Asia Pacific
Quintiles, Singapore
Sheryl Jacobson
Asia Head of Life Science and Healthcare Consulting
Deloitte
Joanna Entwistle
Principal Consultant, GFK Market Access, UK
Robert Barker
CEO, Succinct Medical Communications, UK
Tiberio Catania
Commercial Director
EPG Health Media, UK
Sanjay Singhvi
Director, System Analytic, UK
Chris Gray
President & Managing Director, Adelphi Communications, UK
Anne Marriott
Deputy Managing Director,
Adelphi Communications, UK
Filip Rozewski
International Business Development
MediNeos Observational Research, Poland
Bettina Rillmann
Associate Director, Scientific Affairs
PRA Health Sciences, Germany
Xavier Fournie
Corporate Medical Director, Executive Vice-President, Global Medical Affairs – Real World Evidence, MAPI, France
Alexandra Adams
Director, Late Phase, Europe
Chiltern, UK
Teresa K Wilcox
Scientific Director, Real World Evidence, Evidera, USA
Ian Smyth
Director
MEDNET Consult
Rob Barker
CEO, Succinct Medical Communications, UK
Krista A. Payne
Vice President, Late Phase Studies, Real World Evidence
Evidera, Canada
Dimitra Lambrelli
Research Evidence, Real World Evidence
Evidera, UK
Sophie Hall
Head of Capability Building Practice
Pope Woodhead, UK
Suma Ramadas
Managing Director, Medical Affairs
Campbell Alliance, USA
Alexandre Malouvier
Director of Scientific Affairs, Late Phase Services,
PRA Health Sciences
William Maier
Chief Scientific Officer, Mapi Group, UK
Isabelle Grau
Director, Real World Evidence APAC, Mapi Group, Australia
Tiberio Catania
Commercial Director
EPG Health Media, UK
Sanjay Singhvi
Director, System Analytic, UK
Peter Gannon
SVP Business Partnerships, Within3, Inc.
Jane Turner
Executive Director of Late Phase Research, INC Research, UK
Angela Vinken
Sr. Director Observational Research
Parexel, Netherlands
William C. Maier
Chief Scientific Officer, Mapi Group, UK
Jennifer Eriksson
Associate Director, Real World Strategy & Analytics
Mapi Group, Sweden
Alexandre Malouvier
Director of Scientific Affairs, Late Phase Services
PRA Health Sciences
Rob Barker
CEO, Succinct Medical Communications, UK
James Turnbull
Digital Technical Director, Succinct Medical Communications, UK