Meet our team

Meet our team

Tom Kenny

Chief Executive Officer

Tom Kenny is Chief Executive Officer at Rare Disease Research Partners (RDRP). In this role, he oversees all aspects of the organisation. Before joining RDRP, Tom worked in a wide variety of roles in the public and private sector.

Tom is dual qualified as a GP and Public Health Physician, has a MBA and a Master in Public Health.

Tom can regularly be found digging into the technicalities of rare disease evidence and constructing innovative strategies for improving things for people with rare diseases.

Bob Stevens

Group CEO

Bob Stevens is Group Chief Executive Officer of the parent company, The MPS Society and Chair of Rare Disease Research Partners (RDRP). Bob works on a global scale, promoting the benefits of collaboration between all key stakeholders, the importance of the patient voice and business development.

Before joining RDRP, Bob worked in both the non-profit and private sectors, mainly at board level, as well as managing a private property development portfolio.   Having two sons with a rare disease means this is not simply a job for him, but a way of life.

John Illankovan

Head of Group Finance

John Illankovan is Head of Group Finance at Rare Disease Research Partners (RDRP). In this role he is responsible for the financial management of the company, including internal and external financial reporting.

Before joining RDRP, John spent over 25 years in financial management in the non-profit sector, working as Head of Finance for an international NGO.

John loves to work for RDRP because all the profits made by the company are given back to our parent charity – The MPS Society, to benefit its members.

Toni Ellerton

Executive Assistant

Toni Ellerton is Executive Assistant for Rare Disease Research Partners (RDRP). In this role, she manages the diaries of both Chief Executives, together with assisting with administration, travel and event organisation.

Before joining RDRP, Toni was working within the IT and marketing industry and has acquired over 20 years’ experience as an Executive Assistant.

Since joining RDRP, Toni feels she has gained a good rapport with many specialised clinicians, doctors, consultants, patients and their families. Toni thoroughly enjoys her role and all the many challenges that have come her way. 

Alex Morrison

Head of Research and Medical Communications

Alexandra Morrison (Alex) is Head of Research and Medical Communications at Rare Disease Research Partners (RDRP). In this role, she generates evidence to support the development and reimbursement of new treatments in rare diseases, with a focus on the patient experience.

Before joining RDRP, Alex worked in information, medical affairs and medical communications roles in the pharmaceutical and medical communications industries.  

Alex has an MSc in Information Science from City University, London, a BSc in Medicinal and Pharmaceutical Chemistry from Loughborough University and is a member of the Market Research Society.

Bennie Marshall-Andrew

Head of Clinical Trial Support Team

Benedicta Marshall-Andrew (Bennie) is the Head of the Clinical Trial Support Team at Rare Disease Research Partners (RDRP). Her role is to manage and provide support to the team, ensuring that they deliver the best possible service to RDRP’s clients and clinical trial participants.

Bennie has worked for RDRP for nearly five years and, during this time, has enjoyed engaging with all areas of the rare disease community and finding ways to provide bespoke support to families who take part in clinical trials.

Eva Raebel

Senior Communications and Research Associate

Eva Raebel is Senior Communications and Research Associate at Rare Disease Research Partners (RDRP). Her role involves medical writing, communicating the company’s activities and research to a varied range of audiences and assisting with research studies.

Before joining RDRP, Eva worked as a medical/scientific writer for a medical communications agency and a health behavioural change consultancy and has experience in med comms editorial. She also conducted three years of research for the University of Oxford.

Eva has a PhD in Biological Sciences from University of Liverpool/ University of Oxford, an MSc in Evolution from Imperial College London and a BSc in Biological Sciences from Middlesex University. Eva is delighted to work for a patient-centred organisation and to be able to raise awareness of rare diseases while writing to communicate the latest research to patients, the scientific community and the general public.

Medeah Yaqub

Research Associate

Medeah Yaqub is a Research Associate at Rare Disease Research Partners (RDRP). Her role involves supporting varied research projects and developing patient support materials for those with rare diseases.

Before joining RDRP, Medeah worked as a Clinical Trial Coordinator running a portfolio of clinical trials within the NHS for cancer and gastrointestinal disorders to advance the approval of novel treatments.

Medeah has a BSc (Hons) in Biomedical Science from Queen Mary University and is undertaking a MRes in Clinical Research at King’s College. She finds working in this sector particularly rewarding when research work undertaken by RDRP contributes to a better quality of life for patients and their families.

Sam Wiseman

Managed Access Agreement Coordinator

Samantha Wiseman (Sam) is Managed Access Agreement (MAA) Coordinator at Rare Disease Research Partners (RDRP). In this role, she mainly works on MAAs where she is in regular contact with participants collecting Quality of Life information.

Before joining RDRP, Sam worked in data management and drug safety within Clinical Research roles. Sam has a BSc (Hons) in Physiology from the University of Hertfordshire.

Sam enjoys working for RDRP and seeing how their work ultimately leads to improved lives within the rare disease community.

Chrissy Fortune

Research and Communications Associate

Christine Fortune (Chrissy) is Research and Communications Associate at Rare Disease Research Partners (RDRP).  Her role includes supporting research projects and collecting patient reported outcomes for Managed Access Agreements. Before joining RDRP, Chrissy worked as a Personal Assistant.

Chrissy finds the role especially rewarding when new research on rare diseases is published that RDRP has helped to facilitate.

Pauline Grant

Clinical Trials Support Team Coordinator

Pauline Grant is a Clinical Trial Support Team Coordinator at Rare Disease Research Partners (RDRP). In this role, she provides worldwide logistical support and assistance to patients and their families to ensure that they are able to attend their study visits. 

Before joining RDRP, Pauline spent 12 years working as Deputy Manager of a Montessori Nursery School. Pauline has a Certificate in Management and an AMI Diploma in Montessori Pedagogy.

Pauline feels very rewarded by her role within the Clinical Trial and Patient Access team, as she is able to play a part for each family on their journey to improve the life of the patient.

Lianne Mott

Clinical Trials Support Team Coordinator

Lianne Mott is a Clinical Trial Support Team Coordinator at Rare Disease Research Partners (RDRP). In this role, Lianne organises travel, accommodation and reimbursement of expenses for patients and families attending clinical trials. She also arranges their relocation logistics to enable them to take part in worldwide clinical trials.

Before joining RDRP, Lianne worked in the financial sector organising corporate events. She also has significant customer service experience though her time spent as airline cabin crew.

Lianne enjoys being able to take away some of the strain from the families when planning for a clinical trial study visit and building relationships with those she works with, both clients and colleagues alike.

Jo Slade

Clinical Trials Support Team Coordinator

Joanna Slade (Jo) is a Clinical Trial Support Team Coordinator at Rare Disease Research Partners (RDRP). In this role, Jo arranges travel and accommodation for patients attending clinical trials and the reimbursement of their travel expenses. Before joining RDRP, Jo spent 16 years working for the NHS, mainly in GP surgeries.

Jo has a BA in Hotel and Catering Management and a Post Graduate Diploma in Human Resource Management. Jo enjoys assisting patients and their families with all aspects of their travel and is keen to do all she can to make planning their time away from home less stressful, so they can concentrate purely on their participation in their clinical trial.

Harriet Clayton

Clinical Trials Support Team Coordinator

Harriet Clayton is a Clinical Trial Support Team Coordinator at Rare Disease Research Partners (RDRP). In this role, she organises travel and accommodation for patients and their families and arranges for reimbursement of expenses in order to make participating in the clinical trial as stress-free as possible.

Before joining RDRP, Harriet studied for a BA in French and then worked as an administrator for a law firm whilst studying for a postgraduate certificate in translation.

Harriet enjoys helping people from all over the world participate in clinical trial research and feels grateful that she can ease some of the pressure for families who face enough challenges without the stress of making complicated travel arrangements.