International Niemann–Pick Disease Alliance
Now in its fifth year, Genzyme’s Patient Advocacy Leadership Awards (PAL Awards) program supports non-profit organizations that serve the lysosomal storage disorder (LSD) patient community. From Genzyme “As an independent voice, patient organizations play a vital role in providing leadership, resources and access to care and support for patients and their families around the world. We believe supporting their work is critical to optimizing patient care and meeting the ever-growing needs of the LSD community.”
30 patient organizations from 20 countries responded to the 5th Annual PAL Awards program, submitting proposals for new collaborative and creative activities to support the LSD patient community. Out of the 30 applicants, we are delighted that the INPDA’s “NP Portal” Project was selected by the External Review Committee.
Niemann-Pick diseases are pan-global conditions, yet individuals experience diagnosis, clinical care and family support very differently. A Niemann-Pick information portal will help patient organizations around the world better support local families. The information it provides will be developed and maintained centrally, but accessible, downloadable and adaptable for local use as appropriate. The development of this shared resource will maximize limited resources and minimize duplication, promoting time- and cost-effective collaboration.