Our investment is led by Gavin Jones, Global Advisor, Rare Diseases, and he had the following reflections on 2020 and our activities throughout the year:
‘It was obviously a very difficult year for the rare disease community with concerns over the virus, isolation through shielding and worries for charities over funding. However, there were also some positives with far greater levels of connectivity amongst the community through a virtual world. It meant that we were privileged to be able to work with many more members of the patient advocacy community and hear first-hand the challenges they face and what can be done to improve lives. We look forward to what 2021 brings and partnering again to deliver better outcomes’
OPEN Health commit to publishing our rare disease yearbook on a six monthly basis to maintain positive pressure on all of our teams to constructively take the conversation forward in rare disease.