The Office for Rare Conditions has established a Patient Advisory Group made up from parents/carers and adult patients who attend hospitals in Glasgow. Our Patient Advisory Group brings together patients, families and carers to connect and integrate them into the Office for Rare Conditions and the decisions that influence its work.
Led by Arlene Smyth, Chair, the group meets regularly to discuss their personal experiences of healthcare, raise concerns on their own or others behalf, signpost to new resources and share common experiences. The Patient Advisory Group is supported by the Office and the chair reports directly to the Office Steering Committee.
The Patient Advisory Group meet on the 3rd Thursday every 2 months. You can find the details for the next PAG meeting here.
Members regularly post articles and resources on the PAG Facebook Group. This closed group has been created to help patients and families link with each other and share experiences.
Members of the Patient Advisory Group assist with the organisation of patient events hosted by the Office for Rare Conditions.
If you would like further information on our Patient Advisory Group, please get in touch firstname.lastname@example.org