Genetic Alliance UK are about to launch a new programme to examine gene and cell therapies with our community. We will learn about the technologies from experts and explore the aspects of the treatments that participants feel are most important to the community. We hope to develop a group of informed spokespeople from the genetic, rare and undiagnosed community who understand and can talk about the therapies and produce a guide for engaging with our community on this topic.
We’re looking for people affected by a rare, genetic condition directly, either as patients, parents or carers. Are there people in your networks who would like to be part of this series of workshops? Is cell and gene therapy on the horizon for your community, or much nearer?
Building on our previous ‘Talking About Genome Editing’ project where we collaborated with the Progress Educational Trust to explore the language, messages and implications of genome editing, we want to educate and empower those who are directly affected by rare, genetic or undiagnosed conditions and could benefit from being treated with cell and gene therapy, now or in the future.
We will have two workshops in March and April and we hope to take participants to visit a site for research or manufacture of cell or gene therapy.
If there are individuals within your networks that would be interested in participating, or you would like to know more, then please get in touch with us by emailing [email protected].