The International Niemann-Pick Disease Alliance (INPDA) is a global network of non-profit organisations working in the field of Niemann-Pick disease (NPD). Founded in 2009, through the collaborative efforts of Niemann-Pick UK and the National Niemann-Pick Disease Foundation (USA), the INPDA now has 23 member groups in 17 countries: Argentina, Australia, Brazil, Canada, China, France, Germany, Italy, The Netherlands, Norway, Pakistan, Spain, Switzerland, Taiwan, Tunisia, United Kingdom, USA. 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.
What is the purpose of the INPDA?
The INPDA provides a collaborative forum for the sharing of information and experience regarding all aspects of Niemann-Pick disease, including care and support, the provision and distribution of information and the furtherance of research.
What does the INPDA do?
The INPDA undertakes all of its activities in line with its aim of facilitating progress in the field of NPD. By providing a forum for mutual support, the INPDA aims to establish links between all non-profit Niemann-Pick support groups and to raise awareness of the nature and operations of these, sometimes very different, organisations.
We provide support for patient advocacy leadership and offer practical advice and support to those wishing to establish a new group.
INPDA representatives attend and present at key conferences around the world, including patient group events and wider rare disease events. The INPDA is a member of EURORDIS and Rare Disease International. As a result of its work, INPDA members are increasingly invited to participate in high-level meetings with statutory bodies, authorities and regulators.
The INPDA has a global reach; therefore, it is ideally placed to effectively communicate information to the NPD community via its membership, offering equity of access and ensuring consistency and accuracy of the information provided.
How is the INPDA and the Think Again. Think NPC Campaign connected?
The INPDA undertakes various activities and campaigns aiming to make a difference in the areas of scientific, clinical and therapeutic research, patient care, access to treatments and time to diagnosis.
One of the campaigns INPDA fronts is the Think Again. Think NPC campaign which aims to improve diagnosis of NPC by targeting specialist health care professionals who are currently unfamiliar with the condition and giving them the tools they need to recognise and act upon the symptoms of NPC.