On Monday we announced our partnership with Kantar to manage the day to day running of the IGA’s global neuronopathic Gaucher disease patient registry.
Our CEO, Tanya Collin-Histed said “We are delighted that our vision of a global registry is being taken forward with the patient community as the lead. It will enable us to collect comparable data, mindful of challenges in different countries of access to tests and equipment, to enhance knowledge, improve patient care and drive the research agenda in our community with the patient at the centre. After many years of little interest in the neuronopathic community we now see potential new therapies in development and disease specific patient reported outcome measures being developed. This gives hope to our community that lives will be saved, and families hope for a future for their children becoming a reality.”
This Facebook Live session will allow Tanya to explain the need for the registry and what it will mean to the community and allow you to ask questions.