The Office for Rare Conditions hosts a virtual Patient Advisory Group (PAG) meeting regularly via Zoom. The group meeting is open to all, welcoming anyone interested in joining these sessions. Each meeting focuses on different topics and features insightful talks from expert speakers.
These meetings aim to improve access to information for patients and parents while strengthening the support available to children and adults with rare conditions, as well as their families and carers.
If you would like to attend an upcoming PAG meeting or suggest a topic for discussion, please get in touch with us.
| Previous Meeting Topics | Location |
|---|---|
| Family Fun Event | Linn Park Adventure Playground |
| Patient Reported Experiences – survey results | Zoom |
| Using NHS 24 | Zoom |
| Care Coordination | Zoom |
| The Hospital Pharmacist | Zoom |
| The Power of the Patient Voice – AGM | Zoom |
| Community Children’s Nursing | Zoom |
| Family Fun Event! | Quarriers Conference Centre |
| SPARKS- Counselling; what’s available to help | Zoom |
| Patient Advisory Group Annual General Meeting | Zoom |
| A Parents Experience- Zander and Michelle Simpson | Zoom |
| Child Disability Payment- Lyndsey Maricic | Zoom |
| Summer Holiday Social | Zoom |
| Lets TALK coming out of Lockdown- Lucy Butterworth SAMH | Zoom |
| Inclusive Living/Self directed Support- Lillian Smith | Zoom |
| The Rights of the Child- Dagmar Kerr, Childs health Scotland | Zoom |
| Wine and cheese holiday celebration | Zoom |
| Carers Scotland- Fiona Collie | Zoom |
| Changes to hospital/clinical services- Professor Faisal Ahmed | Zoom |
| Patient Survey results- Dr Monica Hytiris PAG restructure- Arlene Smyth and Liz Dougan | Zoom |
| Information evening with Talks from Genetic Alliance UK, CONTACT and Family Fund. | Zoom |
Office for Rare Conditions Glasgow 