International Niemann-pick Disease Alliance

The International Niemann Pick Disease Alliance (INPDA) is a global network of non-profit organisations, supporting persons affected by Niemann Pick diseases (NPD).  The alliance was formed in 2009 to provide a forum for patient groups and professionals working in the field of NPD. Today, we have an international network of non-profit groups, supporting hundreds of families, and we continue to grow. Despite our language and cultural differences, INPDA members are brought together by a single aim – to improve outcomes for all those affected by Niemann-Pick diseases. By joining together through the INPDA, we give Niemann-Pick diseases a stronger global voice, and progress towards effective treatments for these conditions is accelerated. The INPDA’s overall mission is to assist, connect and support families affected by Niemann-Pick disease worldwide.  To achieve this, our strategy focuses on three key areas: the provision of mutual support between patient groups; the development of information; the stimulation of relevant research. Collectively, INPDA members represent the majority of known NPD patients across world. Our network brings people together, sharing information and ideas with the aim of accelerating progress in the field of Niemann-Pick diseases. To achieve our aims and objectives, we encourage effective collaboration and the sharing of ideas across patient groups, clinical and scientific academia and the pharmaceutical industry. We provide a forum that enables networking on a global scale, reducing overlap and maximising resources. INPDA representatives are regarded as experts in their field; they are regularly consulted regarding clinical research and trials, are involved in high level advisory boards and are invited to speak at international events and conferences.