Meet our team
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 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.
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 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.
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.
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 since 2015 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.
Principal Research and Medical Communications 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.
Senior Research Associate and Managed Access Lead
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.
Medical Communications Associate
Ella Lineham is a Medical Communications Associate at Rare Disease Research Partners (RDRP). Her role involves medical writing and communicating the company’s activities and research to a varied range of audiences.
Before joining RDRP, Ella worked as a medical writer for a medical communications agency.
Ella has a BSc in Biochemistry and a PhD in Biochemistry from the University of Sussex. Ella feels grateful to be able to work for a patient-centred organisation that directly impacts the lives of patients and families effected by rare diseases.
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.
Clinical Trials Support Team Coordinator
Lianne Mott is a Clinical Trial Support Team Coordinator at Rare Disease Research Partners (RDRP). In this role, Lianne is responsible for assisting patients and their families to participate in clinical trials. This involves sourcing suitable travel and accommodation options for study visits, reimbursing study related expenses and assisting with the relocation of families, often to another country, to enable them to take part in worldwide clinical trials.
Before joining RDRP, Lianne worked in the financial sector managing corporate events. She also gained multiple skills during her many years as airline cabin crew.
Lianne finds her role very rewarding and knows that she is able to take away some of the stress from patients and families when they are planning for a clinical trial study visit, allowing them to focus on the clinical trial itself.
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.
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.
Madeline Pearson Dawson
Madeline Pearson Dawson is a Research Associate at Rare Disease Research Partners (RDRP). Her role involves supporting various research projects that benefit the rare disease community.
Madeline is currently studying for her BSc in Psychology with Forensic Investigation and has joined RDRP as part of her third year placement. Before joining RDRP, Madeline worked in the customer service industry and also volunteered in various charity roles.
Madeline has close family members that have rare diseases and understands the importance of research in this area. This experience has inspired her to pursue a career in supporting rare disease communities through research.
Senior Finance Officer
Neera Gupta is a Senior Finance Office at Rare Disease Research Partners (RDRP). In this role, Neera is responsible for managing the Finance related day to day tasks for RDRP, including internal financial reporting.
Before joining RDRP, Neera worked across various sectors including commercial insurance, food produce and entertainment, gaining 15 years’ experience within various Finance roles. Neera has a BSc (Hons) in E-Commerce.
Neera enjoys working for RDRP knowing that the work we do benefits the lives of our patient community.
Marnie Ross is a Research Associate at Rare Disease Research Partners (RDRP). In this role, Marnie works on research projects that serve to better understand and communicate the needs of the rare disease community.
Before joining RDRP, Marnie worked as a project coordinator for an organisation that specialises in business psychology. Marnie has a BSc in Human and Social Sciences and has recently completed an MSc in Social Science Research Methods at Cardiff University in which she explored the impacts of bereavement on young adults.
Marnie is thrilled to be working within such a passionate team that puts patients at the centre of everything they do. She feels grateful to be supporting research that produces insights to make meaningful improvements in the lives of patients and their families.
Sandali Jayasinghe is a Research Associate at Rare Disease Research Partners. In this role, Sandali works on delivering a portfolio of research projects which aim to better understand the unmet needs and challenges faced within the rare disease community.
Before joining Rare Disease Research Partners, Sandali has recently completed a MSc in Clinical Drug Development at UCL. She also has BSc in Biomedical Sciences at University of Sussex.
Sandali feels grateful to be part of an amazing team who conducts research centred around patients’ needs and challenges, and she feels her work contributes to improving patients and families/caregivers’ quality of life.
Clara Morrison is a Research Associate at Rare Disease Research Partners. In this role, Clara works on research projects conducted to improve the understanding of rare diseases and communicate the unmet needs of rare disease patients.
Before joining Rare Disease Research Partners, Clara completed a BA in Business Management and Japanese Studies at Oxford Brookes University.
Clara enjoys working with a team of talented individuals who all strive to better the lives of rare disease patients.
Senior Research Associate
Emilie Wildman is a Senior Research Associate at Rare Disease Research Partners (RDRP). In her role, Emilie carries out research to develop a better understanding about the experiences of people living with rare diseases and their caregivers.
Before joining the RDRP team, Emilie completed a PhD at King’s College London’s Institute of Psychiatry, Psychology and Neuroscience. Her doctoral research explored violence in family and caregiving relationships, particular focusing on family violence by individuals living with a severe mental illness. Emilie also has an MSc in Research Methods in Psychology from University College London, and a BSc in Psychology from the University of Nottingham.
Emilie believes that in order to improve the lives of people affected by rare diseases, it is essential to elevate the voices of patients and caregivers with lived experience. Emilie is therefore excited to have the opportunity to work closely with the rare disease community, and to contribute to improving the outcomes of affected families by conducting vital research.