Rare Disease Research Partners support research and access to treatment for people living with rare conditions

Serving rare disease communities

Our company was founded in 2012 to boost research and improve access to care and treatment for MPS and wider rare disease communities. Starting with just two staff supporting patients taking part in clinical trials, we’ve grown and diversified to offer a comprehensive range of services for pharmaceutical and patient organisation clients.

We put patients at the centre of our business to deliver unique research insights, outstanding support for people taking part in clinical trials and access to new treatments. We help patients with reimbursement, and provide expert rare disease communications

Our core services

Clinical Trial Support Services

We provide patients with access to worldwide clinical trials by offering personalised logistic support to patients and their families throughout their clinical trial journey.

Managed Access Programmes

We deliver Managed Access Programmes that provide bespoke data collection, analysis of patient-reported outcomes and reporting results to stakeholders.


We curate evidence to fully understand the benefits of treatments in populations and support market access for effective medicines.


We undertake novel research into the impact of rare conditions on patients and their families.

Medical Communications

We develop communications that raise awareness and understanding of rare diseases, from patient-friendly materials to scientific publications.


We have specialist knowledge of rare conditions and offer expert advice in all aspects of rare diseases.


Meet our team

Tom Kenny

Chief Executive Officer

Bob Stevens

Group CEO

John Illankovan

Head of Group Finance

Toni Ellerton

Executive Assistant

Alex Morrison

Head of Research and Medical Communications

Bennie Marshall-Andrew

Head of Clinical Trial Support Team

Eva Raebel

Principal Research and Medical Communications Associate

Sam Wiseman

Senior Research Associate and Managed Access Lead

Ella Lineham

Medical Communications Associate

Pauline Grant

Clinical Trials Support Team Coordinator

Lianne Mott

Clinical Trials Support Team Coordinator

Jo Slade

Clinical Trials Support Team Coordinator

Harriet Clayton

Clinical Trials Support Team Coordinator

Madeline Pearson Dawson

Research Associate

Neera Gupta

Senior Finance Officer

Marnie Ross

Research Associate

Sandali Jayasinghe

Research Associate

Clara Morrison

Research Associate

Emilie Wildman

Senior Research Associate



Working together

We are always happy to talk through your future projects and how we may be able to help. Please contact us for an informal discussion