To celebrate World Birth Defects Day we asked the team at Public Health England to talk about the be…
We have submitted a briefing to the Northern Ireland Assembly Committee for Health, Social Services and Public Safety on the Control of Data Processing Bill.
The sharing, use and governance of data are important issues for rare and genetic disease communities. Data sharing has an important role to play in research to address the high level of unmet health need for people with rare and genetic conditions.
Genetic Alliance UK has submitted a briefing to the Committee highlighting the value of secondary use of data and the attitudes towards this within our community.