Jim Green | President
International Niemann-Pick Disease Aliance

Jim Green, President, International Niemann-Pick Disease Aliance

Jim and his wife Susan are parents of three children, Roy and Murray who were diagnosed with NPC and Ailsa who is not affected. Roy was diagnosed when he was 14 and is now 39; Murray was diagnosed when he was 11 and died, following a bout of uncontrollable seizures, when he was 18. Ailsa now has a son of her own, Jamie, who is 12, very active and extremely well! Jim is a retired school principal who, in 1991, together with Susan founded the Niemann-Pick Disease Group (UK). He has been chairman of that organisation since then. Jim was also an original member of the NNPDF Board when it was formed, here in the USA, in 1992. He continued to serve on the board until 2004. In the 24 years since 1991 Jim has witnessed many advances in research and understanding of NP disease and in the information and support available for families. He has also met many families, researchers, clinicians and other people involved with these diseases. In 1991 there were no support Foundations and little or no information. Jim has seen the growth of parent involvement and influence and has been witness to the huge difference people can make when they work together. In October 2009 this took another step forward with a collaborative venture between the NNPDF and the NPDG (UK) when they brought together NP foundations from around the world to network and share information. This resulted in the formation of the “International Niemann-Pick Disease Alliance” the INPDA. This group now meets by teleconference every two months and comes together every two years on a “Face to Face” basis in order to develop progress. Ten countries are now involved and six more have started, or are starting, foundations in their own countries. Jim is the president of the International Niemann-Pick Disease Alliance


Day 1 Orphan 14th Nov @ 09:50

Current state of the art in multi-stakeholder and international collaborative processes: The importance of early dialogue initiatives & expedited regulatory pathways

  • Encouraging bigger and more innovative collaboration approaches between pharma, patient and academic organisations
  • Good practices to generate pre and post-marketing data – the value of shared governance of registries
  • Possible solutions and guidance to the regulatory requirements and standardisation of registry data

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