PAG meetings

The Office for Rare Conditions holds a zoom meeting every 2 months for our Patient Advisory Group. We have recently expanded our PAG to all so anyone can join these monthly meetings where we discuss different topics and have talks from fantastic speakers!

These meetings aim to increase the information accessed by patients and parents and enhance the support that is available to children and adults with rare conditions and their families/carers.

If you are interested in attending the next PAG meeting or want to suggest a topic for future meetings then please email

23rd July 2022Family Fun Event!Quarriers Conference Centre
17th March 2022SPARKS- Counselling; what’s available to helpZoom
20th January 2022Patient Advisory Group Annual General MeetingZoom
18th November 2021A Parents Experience- Zander and Michelle SimpsonZoom
16th September 2021Child Disability Payment- Lyndsey MaricicZoom
22nd July 2021Summer Holiday SocialZoom
20th May 2021Lets TALK coming out of Lockdown- Lucy Butterworth SAMHZoom
18th March 2021Inclusive Living/Self directed Support- Lillian SmithZoom
21st January 2021The Rights of the Child- Dagmar Kerr, Childs health ScotlandZoom
10th December 2020Wine and cheese holiday celebrationZoom
19th November 2020Carers Scotland- Fiona Collie Zoom
22nd October 2020Changes to hospital/clinical services- Professor Faisal AhmedZoom
17th September 2020Patient Survey results- Dr Monica Hytiris
PAG restructure- Arlene Smyth and Liz Dougan
9th July 2020Information evening with Talks from Genetic Alliance UK, CONTACT and Family Fund.Zoom