Digital Infuzion News

Rare Disease Awareness Day 2016 at Digital Infuzion

In solidarity with the international rare disease community, Digital Infuzion is proud to make the voice of rare diseases heard on Rare Disease Day 2016. Rare Disease Day’s 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. Rare Disease Day 2016’s theme Patient Voice recognizes the role that an individual patient plays in instigating the changes that can transform their lives, and also the lives of their families. 

Since rare diseases are at the heart of Digital Infuzion’s N of 1 disease management analytics platform, Rare Disease Day is especially significant to us.

Digital Infuzion's contributions to rare diseases in 2015:

  • Delivered Mucopolysaccharidosis type I (MPS I) registry to Genzyme, a Sanofi Company, marking the transition of all of Genzyme’s Lysosomal Storage Disorder (LSD) registries to the N of 1 Platform.
  • The Hereditary Inclusion Body Myopathies (HIBM) patient recorded outcomes component of the N of 1 platform was launched with Ultragenyx Pharmaceutical.
  • Provided the Fibrodysplasia Ossificans Progressiva (FOP) Connection Registry sponsored by the International FOP Organization.
“For me, it is all about dreaming up things that we can do on the N of 1 platform to facilitate collaboration, the engagement of patients and researchers, ensuring the quality of the data, and helping to bring research together to find a cure.” – Stacy Carroll, Director, Professional Services at Digital Infuzion. 

Learn more about Digital Infuzion's N of 1 disease management analytics and electronic patient reported outcomes platform by clicking here

 

 





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