What is the INPDR?
Who we are
The International Niemann-Pick Disease Registry (INPDR) is a non-profit organisation built and sustained by a global network of people committed to improving understanding and outcomes for those affected by Niemann-Pick diseases.
Our work is made possible by the combined expertise of clinical, scientific, operational, and community leaders, working together to ensure the registry is robust, meaningful, and aligned with the needs of the community.
Board of Trustees
The INPDR is overseen by our Board of Trustees, who are responsible for the organisation’s strategic direction, governance, and long-term sustainability.
Jim Green , Chair, Board of Trustees
Jim Green is a long-standing advocate within the international Niemann-Pick community and has played a pivotal role in the development of the INPDR. A former President of the International Niemann-Pick Disease Alliance (INPDA), he has been a driving force behind efforts to improve collaboration, understanding, and research in Niemann-Pick diseases. As Chair of the Board of Trustees, he helps guide the strategic direction and governance of the organisation.
Toni Mathieson, Trustee
Toni Mathieson brings both personal and professional experience to her role as a Trustee. As Chief Executive of Niemann-Pick UK and a long-standing patient advocate, she has worked extensively with national and international stakeholders to advance support, research, and awareness for Niemann-Pick diseases. Toni was also a founding Director of the INPDR and remains committed to ensuring the registry delivers meaningful benefits for patients and families worldwide.
Tarekegn Geberiwot, Trustee
Professor Tarekegn Geberhiwot is a leading specialist in inherited metabolic disorders and rare diseases. Based at University Hospitals Birmingham and the University of Birmingham, his research focuses on improving understanding of rare metabolic conditions through clinical research, biomarkers, genomics, and international patient registries. He has played a key role in the development of the INPDR and continues to contribute extensive clinical and scientific expertise to its work.
Marie Vanier , Trustee
Dr Marie Vanier is internationally recognised for her contributions to the understanding of lysosomal storage disorders, particularly Niemann-Pick diseases. Over a distinguished research career spanning several decades, she has made significant contributions to disease characterisation, diagnosis, and scientific discovery, authoring numerous influential publications. Her expertise continues to support progress in Niemann-Pick research and patient care.
Justin Hopkin, Trustee
Dr Justin Hopkin is a physician, rare disease advocate, and member of the Niemann-Pick community. A long-standing supporter of patient-centred research and evidence generation, he has worked closely with patient organisations, regulators, researchers, and industry partners to advance awareness and treatment development. His experience combines clinical leadership with a deep commitment to ensuring that the patient voice informs research and decision-making.
Andrea Dardis, Trustee
Dr Andrea Dardis is Head of the Laboratory of Rare Diseases at the University Hospital of Udine, Italy. Her work focuses on the diagnosis and study of lysosomal storage disorders, including Niemann-Pick diseases. With extensive experience in biochemical and molecular genetics, and more than 90 scientific publications, she brings significant scientific and diagnostic expertise to the Board.
Simon Day, Trustee
Dr Simon Day is an internationally recognised expert in clinical trials, biostatistics, and rare disease drug development. Having worked in academia, regulatory agencies, and the pharmaceutical industry, he provides specialist expertise on clinical research methodology and evidence generation. He is particularly well known for his contributions to rare disease research and the development of treatments for underserved patient populations.
Garland Alvey, Trustee
Garland Alvey is a patient advocate and community leader whose involvement in the Niemann-Pick field is driven by personal experience as the father of a child affected by Niemann-Pick disease type C (NPC). Through his advocacy work, he has supported efforts to increase awareness, influence policy, and accelerate progress in research and treatment development. He brings a strong patient and family perspective to the Board of Trustees.
Louise Broge, Trustee
Louise Broge brings extensive experience from the life sciences sector, with a background in medical communications, project leadership, and the development of healthcare initiatives. Her expertise supports the INPDR’s commitment to collaboration, evidence generation, and advancing understanding of Niemann-Pick diseases through high-quality data and research.
Registry Management Team
Our Registry Management Team leads the day-to-day delivery of the INPDR and the implementation of our strategy.
Their work includes:
- Oversight of the registry platform and data systems
- Data curation and quality management
- Site onboarding and support
- Regulatory and ethical compliance
- Community engagement and communications
Shaun Bolton, Chief Operating Officer
Shaun oversees the operational delivery of the INPDR, ensuring the organisation’s activities, systems, and partnerships support its mission to advance understanding and outcomes in Niemann-Pick diseases.
Solomon Mbua, Global Lead, Registry Programs
Solomon leads the development and delivery of INPDR’s registry programmes, working with international partners, clinical sites, and community stakeholders to support the collection and use of high-quality registry data.
Adel Sabet Morsy, Clinical Research Associate
Adel supports the data quality operations of the registry, working closely with participating sites to facilitate data collection, maintain data quality, and support clinical research activities across the INPDR network.
David Storey, Data Protection Consultant
David provides specialist guidance on data protection and privacy, helping to ensure that registry data is managed securely, responsibly, and in accordance with applicable regulations and best practice.
Maria Garrido, Communications and Engagement Consultant
Maria supports communications and stakeholder engagement activities across INPDR, helping to raise awareness of the registry and strengthen connections with the global Niemann-Pick community.
Lynne Gordon, Finance Manager
Lynne oversees the financial management of INPDR, supporting the organisation’s sustainability and ensuring effective stewardship of resources in support of its strategic objectives.
Chantelle Taggart, Communications and Engagement Consultant
Chantelle supports the development of communications, content, and engagement activities across INPDR. She works to ensure that information about the registry is clear, accessible, and meaningful for patients, families, clinicians, researchers, and other stakeholders.
Krista Casazza, Research Consultant
Krista provides research expertise to support the scientific aims of INPDR, helping to maximise the value of registry data and contribute to evidence generation in Niemann-Pick diseases.
Prof Tarek Hiwot, Chief Medical Officer
Professor Tarek Hiwot provides medical leadership for INPDR, overseeing the clinical aspects of the registry and supporting its role in advancing knowledge, research, and care in Niemann-Pick diseases.
Dr Justin Hopkin, Chief Scientific Officer
Dr Justin Hopkin provides scientific leadership for INPDR, guiding the organisation’s research strategy and supporting the use of registry data to generate meaningful insights into Niemann-Pick diseases.
Scientific Advisory Committee (SAC)
Our Scientific Advisory Committee (SAC) brings together international experts in Niemann-Pick diseases, alongside representatives from the patient community and wider research field.
The SAC provides independent advice on scientific, clinical, and ethical matters. It also plays an important role in reviewing data access requests and supporting the ongoing development of the registry.
Ambassador Programme
Our Community Ambassador Programme reflects the global nature of the Niemann-Pick community.
Ambassadors help raise awareness of the registry, encourage participation, and support engagement within their regions and internationally. Their role is vital in ensuring the registry remains connected to and representative of the community it serves.
To find out more, please contact us.
Working in partnership
The INPDR works closely with the International Niemann-Pick Disease Alliance (INPDA), aglobal network of patient organisations.
This collaboration helps ensure strong connections with the international patient community and supports shared goals around awareness, understanding, and progress in Niemann-Pick diseases. To find out more about INPDA and its partner organisations, you can visit their website.
Get involved
We value the insight, experience, and expertise of the wider Niemann-Pick community. We welcome engagement from patients and families, clinicians, researchers, and organisations who share our aim of improving understanding and outcomes.
If you would like to learn more, provide feedback, or explore opportunities to work with us, please get in touch.