Collaboration
First International Meeting of Non-Profit Niemann-Pick Disease Organisations
In October 2009, the First International Meeting of Non Profit Niemann-Pick Disease Organisations took place in Edinburgh.
Throughout the weekend discussions centred around the possible creation of an International Niemann-Pick Disease Alliance. |
Announcing the Launch of the Austrialian NPC Foundation
It is with great pleasure that we announce the official set up of the Australian NPC Disease Foundation incorporated in Australia by Mandy Jacobs, mum to Matthew 22 and Tim 19 - both with NPC.
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New UK LSD Collaborative Group Established
Representatives from UK Lysosomal Storage Disorder Patient Organisations have joined forces to create a strong lobbying and action group for LSD patients and their families in the UK.
The Group is made up of patient representatives from the Niemann-Pick Group (UK), the Gauchers Association, The Society for Mucopolysaccharide Diseases (the MPS Society), the Batten Disease Family Association, and the Association for Glycogen Storage Disease.
The Group first met in January 2007 to discuss common issues, such as working with the pharmaceutical Industry, the development of homecare services for patients, new born screening, the development of metabolic networks in the UK, the need for research into the brain, and representation on the Health Technology Assessment longitudinal study into enzyme replacement therapy (ERT) for LSDs.
Further information can be found in the Group’s Newsletter