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

Serving rare disease communities

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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

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Managed Access Programmes

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

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Evidence

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

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Research

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

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Medical communications

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

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Advice

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

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The RDRP philosophy

Patient focussed

We maintain a unique and specialised understanding of patients and their rare diseases in order to deliver an outstanding service, to our customers, that ultimately, benefits patients

Collaboration

We build strong relationships with partners working in the rare disease field in order to achieve the best for all patients

Expertise

We believe that professional knowledge can only take us so far and we take the time to understand the individual needs of patients, their families and their disease

Innovation

We are proud to be the first service of its kind to have grown from a patient organisation – the MPS Society UK. For over a decade, we have led the field in enabling rare disease patients to attend and remain on clinical trials, and access treatments

Collaborations

Meet our team

Tom Kenny

Chief Executive Officer

Toni Ellerton

Executive Assistant

Chrissy Fortune

Research and Communications Associate

Pauline Grant

Clinical Trial and Patient Access Officer

Chris Handzlik

Clinical Trial and Patient Access Officer

John Illankovan

Head of Group Finance

Bennie Marshall-Andrew

Clinical Trials Team Lead

Alex Morrison

Head of Research

Lianne Mott

Clinical Trial and Patient Access Officer

Eva Raebel

Senior Communications and Research Associate

Jo Slade

Clinical Trials Support Officer

Bob Stevens

Group CEO

Sam Wiseman

Managed Access Agreement Coordinator