CamRARE’s Companies Forum

an opportunity learn to network and collaborate

CamRARE Companies Forum meetings welcome representatives from pharmaceutical, biotechnology and healthcare companies operating in the rare disease space who are interested in understanding the regulatory environment for orphan medicinal products and working collaboratively on projects. 

Meetings are conducted under Chatham House Rules and held three times a year. Content for discussion is agreed amongst the group and high calibre speakers sourced by CamRARE. Meetings are a half to full day,  informative, relaxed and collaborative and members receive presented slides and minutes of the meeting for future reference.


Alexion AstraZeneca Rare Disease logo
Pfizer logo
NIHR Bioresource
EAHSN master logo
genomics england logo
Healx Logo
Illumina logo
lifearc logo
Congenica logo
Orchard Therapeutics logo
Kyowa Kirin logo
Kyowa Kirin logo
Bionical Emas logo CamRARE companies Forum

What do our members say?

Owen Marks, Head of Rare Diseases at Pfizer shares his thoughts after attending Cambridge Rare Disease Network’s  virtual Companies Forum – an interesting discussion on rare disease clinical trials and learnings from the pandemic.

Recommended reading


Read CamRARE’s blog exploring how our Companies Forum is seeking to challenge the status quo in orphan therapeutic development and support companies to connect the dots.

pharmaphorum logo

Pharmaphorum’s George Underwood talks to CamRARE about the biggest challenges facing rare disease pharma, and how the industry can tackle them.


3 May 2024: Supporting Patient Groups to become research ready in the context of drug development- Collecting Impactful Data

Speakers: Lee Reavey, NCBRS Worldwide; Neil Bennett, Treat-NMD and Florence Barkats, Cisiv 


Fri 10 November 2023: Rare Disease Research Landscape Study Results and Follow-up

The Rare Diseases Landscape Report provides an overall picture of rare disease research that was taking place across the UK over 5 years, from 2016 – 2021. It also presents a clear depiction of where it was happening and who funded it.

Speakers: Dr Kath Bainbridge, Head of Rare Diseases and Emerging Therapies, Department of Health and Social Care

26 May 2023: The UK Rare Disease Framework and Action Plans 2023

Speakers: Kath Bainbridge, Head of Rare Diseases and Emerging Therapies, DHSC and speaker TBC from NHS England. 

Tues 28 June 2022: Medical Education by Industry

How do primary care clinicians learn about rare diseases and genomics, what do they need to know, and how do we contribute positively to that education?

Speakers: Dr Lucy McKay – Medics4RareDiseases, Dr Will Evans, GP, Healthcare researcher, Clinical Lead at Mendelian Health and Chairman of Niemann-Pick Uk

18 January 2022: Innovative Medicines Fund

Speakers: Thomas Strong and Sheela Uphadayaya, National Institute for Health and Care Excellence (NICE)

20 July 2021: Innovative Licensing and Access Pathway (ILAP).

Logos of patient groups and companies at CamRARE Companies Forum partnering event

21 May 2021: Industry & Patient Group Partnering

Ten rare disease patient groups pitch their organisation and unmet therapeutic needs to our Companies Forum partners followed by speed dating with a mission.

assortment of pills and capsules

9 Oct 2020: Rare Disease Clinical Trials in the Covid/ post-Covid environment

Speakers: Dr. Elin Haf Davies, founder and CEO of Aparito, specialising in remote monitoring for clinical trials; Dr. Steve Anderson, CSO of Covance, Drug Development global CRO;  and Dr.Beatrice Panico, Senior Medical Assessor at the MHRA Clinical Trials Unit.

6 MAR 2020: NICE’s Health Technology Assessment process for rare disease assets

Speakers: Professor Ron Akehurst, member of the HST Evaluation Committee and founder of Sheffield University’s School of Health and Related Research (ScHARR), one of NICE’s Evidence Review Groups (ERGs) and  Sheela Upadhyaya,  HST and Topic Selection Specialist.  National Institute for Health and Care Excellence

29 NOV 2019: Collaborative Strategies for Drug Development for Rare Conditions

Speakers: Prof Chas Bountra –pro-vice chancellor of innovation, Oxford University,  How can we work together to produce more affordable medicines, more quickly and patient group CEOs Dan Lewi – CATs Foundation, Tess Harris – PKD  UK, Allison Watson – Ring20 Research & Support