The NSC have announced that as part of an upcoming awareness and impact campaign they will be holding two Zoom focus groups to both introduce the project and encourage a free flowing dialogue that feeds into its development.
At present the project will take the form of multiple pieces of content, including a dramatic short film and multiple interviews with patient leaders and advocates within the collaborative, however they are determined for the patient voice to be heard loud and clear, particularly those with an experience of rare diseases, the "diagnostic odyssey" and newborn screening.
You are welcome to join one or the other (you may attend both but there will naturally be a lot of repetition). However the group conversations will recorded and released for those who miss them, and involvement is encouraged throughout - just get in touch.
We hope as many of you can make it as possible...the more voices from our shared community we can hear from the better!