Improving the care of Niemann-Pick patients across the world.

About the INPDA

Who is the International Niemann-Pick Disease Alliance (INPDA)?

The INPDA is an alliance of non-profit organisations supporting those affected by Niemann-Pick disease. This organisation operates as a global network to exchange information, experience and knowledge of Niemann-Pick disease. More information about the INPDA can be found at http://www.inpda.org/.

 

What is the role of the INPDA in the Think Again. Think NP-C campaign?

The campaign is led by the INPDA, with the collaboration and financial support of Actelion Pharmaceuticals Ltd. The INPDA member organisations (listed above) will be fundamental in disseminating the campaign and its messages locally via their network of healthcare professionals.

What guidance is available to support INPDA members to roll-out the campaign locally?

A number of materials have been developed to support INPDA members to roll-out the campaign to healthcare professionals in their country. For further information on these guidance handbooks, please contact us.

Need help or further information? Please Contact us.

What other projects are the INPDA leading to improve patient outcomes?

The INPDA is leading a project in collaboration with clinicians, scientists, researchers, pharmaceutical companies and patient associations across the world. This project, the International Niemann-Pick Disease Registry (INPDR), aims to improve the care of patients with all types of Niemann-Pick Disease by:

  • Sharing information – collating anonymised patient data from across the world in a consistent format
  • Gaining knowledge and insight – establishing the natural history of Niemann-Pick diseases
  • Improving research – coordinating research efforts globally
  • Enabling rapid diagnostics – facilitating equitable access to state of the art diagnostic tests
  • Providing an inventory of patients – for recruitment to interventional studies

The project is co-funded by the EU Directorate General for Health and Consumers (DG-SANCO) and the partner organisations. It is coordinated by University Hospitals Birmingham NHS Foundation Trust (UHB) in the UK, with 11 associate partners across 7 EU countries and 17 international collaborating partners.

Find out more about the INPDR at http://inpdr.org/.

 

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