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.
In the 1990s, when a person was diagnosed with NPD they were told they would never meet anyone else affected, as the conditions are so rare. But people directly impacted by the disease – patients themselves, their family members and friends – began setting up support groups, connecting families and drawing in impassioned and dedicated people to fight their corner, determined that no family diagnosed with NPD should face the future alone.
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.
We align with the following UN Sustainable Development Goals:
