NPUK is proud to be a founding member group of the International Niemann-Pick Disease Alliance (INPDA), a global network of non-profit organisations which has supported those affected by Niemann-Pick diseases since 2009.
Back in the in the 1990s when we first established our small charity, when a person was diagnosed with NPD they were told they would never meet anyone else affected due to the conditions due to them being so rare. Despite this, there was hope, and people started to connect with one another; people directly impacted by the diseases – patients themselves, their family members, friends, and so on, started to come together and set up support groups which would connect families and pull together a sense of advocacy which would mean no family diagnosed would have to face a future with NPD alone. These distinct charities, groups, and communities across the world then banded together under the shared INPDA banner.
Today, the INPDA is an international network of non-profit groups, supporting hundreds of families, which continues to grow every single year. Despite 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 feel that NPUK is able to assist in giving Niemann Pick diseases a stronger global voice, which inevitably accelerates progress towards effective treatments and therapies. If you would like to learn more about the International Niemann-Pick Disease Alliance (INPDA), please visit their dedicated website at www.inpda.org or connect with them on social media.