"An International Response to a group of diseases that present challenges that cross all national boundaries"

The International Niemann-Pick Disease Alliance is an alliance of non-profit support organisations who are associated with the rare group of genetic diseases known collectively as Niemann-Pick Disease.  The Alliance was formed in October 2009 with a view to providing a forum where, through the exchange of information, experience and knowledge, progress could be accelerated.   It is therefor, fundamentally, a network.

The following Aims were agreed at the first meeting :

• To focus on International Collaboration

• To learn from other Foundations

• To encourage foundations, researchers, clinicians and industry representatives to meet regularly

• To develop strong networks - face to face contact

• To identify shared goals and address common challenges

• To co-ordinate access to clinical trials and therapies

• To create a stronger voice re. health policy

• To share ideas and practice regarding research and clinical trials

At present there are 9 separate foundations in the Alliance. For list see here