Digital Infuzion News

Digital Infuzion is Proud to Celebrate Rare Disease Day 2014!

In solidarity with the international rare disease community, Digital Infuzion is proud to raise and join hands for Rare Disease Day 2014.  Rare Disease Day’s main objective is to raise awareness internationally amongst policy makers and decision-makers about rare diseases and the impact they have on the lives of patients and families.  Digital Infuzion is proud to be part of projects that help patients and researchers around the world striving to understand rare diseases and improve the quality of care available to patients and their caregivers.  “We are humbled every day to do our share in helping patients with rare diseases live with more understanding about their condition, understand their data, and bring new treatments to market where they are so desperately needed,” said Chris Jones, Vice President, Health IT Strategy. 

Digital Infuzion's contributions to the rare disease space:

  • Digital Infuzion partnered with Genzyme to create the RegistryNXT! platform and migrated three of Genzyme’s lysosomal storage disorder registries data (Pompe, Fabry, and Gaucher diseases). We have recently begun the migration of Genzyme’s Mucopolysaccharidosis I (MPS I) Registry.
  • Digital Infuzion’s N of 1 team created and configured Synageva’s Lysosomal Acid Lipase (LAL) Deficiency Registry
  • Digital Infuzion’s team at National Center for Advancing Translational Sciences (NCATS) provides technical support to the Office of Rare Diseases at the National Institutes of Health.



Author: Jane Siegel

Categories: All Digital Infuzion News, Corporate News, Observational OutcomesNumber of views: 4709