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Meet The Team

Consilium Scientific

Consilium Scientific

Consilium Scientific is an independent non-profit organisation aiming to improve clinical research through scientific rigour and transparency

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Human Data Sciences

Human Data Sciences is a team of experts practised in the analysis of healthcare data. The multi-disciplinary team works at the vanguard of our respective disciplines.
 

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Realise Advocacy

Realise Advocacy is working to build equitable and sustainable support for rare disease PAGs' involvement in drug development and access

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Coventry University

The Coventry University Research Centre for Healthcare and Communities and its Research Methods and Evaluation Unit will most actively participate in this project.

Consilium Scientific
Leeza Osipenko

Leeza Osipenko, PhD

Project Co-Lead 

Jack Lewis

Jack Lewis, MSc

Policy Researcher

Andrea Scensson

Andrea Caputo Svensson, PhD

Project Manager

Scott Lewis

Scott Lewis, BSc

Administrative Analyst

Realise Advocacy
Josie Godfrey

Josie Godfrey

Project Co-Lead & RAG Lead

Lindsay Birrell

Lindsay Birrell

PPIE Lead

Coventry University Research Centre - Healthcare and communities
Ala Szczepura

Prof. Ala Szczepura

Healthcare Research & Policy Evaluation

Aimee Walker-Clarke

Aimee Walker-Clarke, PhD

Research Fellow

Petra Wark

Prof . Petra Wark

Research Co-Lead

Aimee Walker-Clarke

Nikki Holliday, MSc

User-centred Research Design Advisor

Human data sciences
Craig Currie

Craig Currie, PhD

Data Analytics

Christopher Morgan

Christopher Morgan, PhD

Data Analytics

RareCare PPIE groups

Click on the logo to learn more about each organisation and their leads:

Beacon
RARE Youth Evolution
CAMRARE
Breaking Down Barriers
Rare QoL
Alström Syndrome UK
Genetic alliance
SWAN
Medics 4 rare diseases M4RD
Metabolic Support UK

Research Advisory Group

Co-Chair

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Prof. Mark Sheehan

Co-Chair

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Josie Godfrey

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Prof. Paul Gissen​

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Prof. Helen Firth​

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Richard Brown​

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Eric Low​

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Robin Lachmann

Jill Carlton

Jill Carlton

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Durhane
Wong-Rieger

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Victoria Davison​

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Kailayanathan Thushyanthi

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Annette Crosse

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Anoushka Chandra

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Lara Bloom

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Judith
Shorrock

Contact Us

Please feel free to leave us a message below if you want to get into contact with any member of our team, or just want to leave a question.

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