Who We Are

Patients are at the heart of the INPDR and working hard behind the scenes are a team passionate about achieving our objectives, as well as a determined global network of experts and advocates.

We have a number of strategies and procedures in place to ensure the INPDR is sustainable, achieves objectives, protects data and continues to work for the benefit of patients.

We are governed by Articles of Association and Memorandum of Association and run by an independent Board of Trustees who are responsible for overseeing the future direction and development of the INPDR.

On a day to day basis, the Registry Management Team is responsible for implementing strategy, ensuring compliance and responding to enquiries, including data requests. The Registry Management Team works closely with a Working Group and specialist Sub Working Groups made up of representatives from patient groups, clinicians, industry and researchers.

The Scientific Advisory Committee (SAC) is made up of a panel of experts who advise the Registry Management Team on scientific and clinical matters, consider research requests and provide guidance to the Board of Trustees.

Board of Trustees

Toni Mathieson

As well as serving as a Trustee for the International Niemann-Pick Disease Registry (INPDR), Toni has held the post of Chief Executive for Niemann-Pick UK since 2005. She is also Trustee and UK representative for the International Niemann-Pick Disease Alliance (INPDA), Chair of the UK LSD Patient Collaborative and a member of the NHS England Metabolic Disorders Clinical Reference Group.

Toni and her husband are parents to three children affected by Niemann-Pick Disease Type C. Although their children have sadly passed away, Toni remains committed to her work on behalf of patients and families affected by Niemann-Pick Disease. Her personal experience assists in bringing understanding and empathy to her role, along with professional skills gained during her career in marketing and human resources.

Tarek Hiwot

Dr. Tarek Hiwot currently serves as the Clinical Lead for the Inherited Metabolic Disorders (IMD) Service at University Hospitals Birmingham. His wealth of experience and passion within the field of rare disease(s) has been a driving force of the International Niemann-Pick Disease Registry (INPDR) from its inception.

Dr Hiwot has aecenas sagittis est est, vitae vulputate leo dignissim sit amet. Pellentesque fermentum id mauris id mattis. Morbi euismod urna rhoncus augue venenatis ultrices eu at tellus. Etiam convallis velit felis, nec blandit justo venenatis at.

Jim Green

Nunc lobortis tortor a mauris fringilla porttitor et ac augue. Nunc ac nulla id ante cursus porta. Cras nec elit risus. Ut gravida felis sapien, vitae tristique dolor cursus eu. Nulla nibh dolor, ultricies sit amet justo ut, iaculis posuere orci. Sed sed turpis consectetur libero elementum venenatis et nec tellus. Cras leo arcu, molestie in tempus eu, commodo varius metus. Quisque ullamcorper diam risus, in malesuada lorem fringilla non. Proin convallis commodo tristique. Mauris non luctus metus. Nulla facilisi. Proin fringilla tincidunt nisl, a congue elit finibus quis. Morbi eget dapibus ex, finibus dapibus quam. In sit amet orci et sapien vulputate vehicula. In sodales tellus et dolor pretium, sed porttitor tellus lobortis. Curabitur ac vehicula neque. Maecenas sagittis est est, vitae vulputate leo dignissim sit amet. Pellentesque fermentum id mauris id mattis. Morbi euismod urna rhoncus augue venenatis ultrices eu at tellus. Etiam convallis velit felis, nec blandit justo venenatis at.

 

Marie Vanier MD

Dr Marie T Vanier (MD, PhD) has been involved with the INPDR since the beginning as a key member of the International Niemann-Pick Disease Alliance (INPDA) and supporter of the original EU funded project.

Dr Vanier received her university degrees and medical training in Lyon, France and Göteborg, Sweden. Alongside her position as Director of Research at the French National Institute of Health and Medical Research (INSERM) (currently emeritus) from 1975 to 2009 she was the Head of a University Hospital laboratory offering diagnostic services (biochemistry and molecular genetics) for neurolipidoses. Her laboratory was one of the earliest in Europe to offer enzymatic assays for Niemann-Pick and Krabbe diseases, and the first to develop Niemann-Pick C testing.