Genetic Alliance UK are delighted to be supporting the Scottish Government in their work to implement the UK Rare Diseases Framework by developing a new Rare Diseases Action Plan for Scotland.
Over the next few months, Genetic Alliance UK will be providing opportunities for people living with rare conditions in Scotland to share their experiences with the Scottish Government and have their say in the development of the new Rare Diseases Action Plan for Scotland.
We are pleased to announce that the first virtual event will take place on Thursday 2 September (2pm-3:45pm).
This virtual event will be held in collaboration with the Scottish Government’s Rare Disease, Genomics and National Services Team and will include:
- An overview of the UK Rare Diseases Framework
- An introduction to the Scottish Government’s work to develop a Rare Diseases Action Plan for Scotland
- Details of how people living with rare conditions in Scotland will be involved in the development of the Rare Diseases Action Plan for Scotland
- A discussion to determine what matters most to people living with rare conditions in Scotland.
This virtual event will take place online via Zoom and is designed for people living with rare conditions in Scotland, parents, carers and representatives of patient groups that support people living with rare conditions in Scotland.
This event is free to attend, however spaces are limited and registration is required.
To register to attend please contact natalie@geneticalliance.org.uk
To keep up to date with our work in Scotland, including details of future events, please sign up to our Virtual Involvement Panel here.