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. 

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Jim Green

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Marie Vanier

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