The Office for Rare Conditions is working to put the patient to the forefront, offering information and support to those affected by conditions that are not common or may not yet even be diagnosed.
The Office for Rare Conditions, which is supported by the Glasgow Children’s Hospital Charity, the University of Glasgow and Greater Glasgow & Clyde NHS Board works with patients and families affected by rare, low prevalence and undiagnosed conditions and the healthcare professionals who work with them.
Empower
- by providing information
- by signposting
- by raising awareness and understanding of rare conditions
Connect
- by liaising and networking with patient support organisations and healthcare professionals
- by organising patient & family support meetings and training events
- by encouraging participation in rare condition research and clinical trials
Strengthen
- by being a strong voice together
- by representing patients, families, and clinicians
- Increase awareness of rare conditions amongst health care staff looking after patients who attend a Glasgow hospital.
- Enhance the support available to adults, children, families and carers.
- Promote standards of clinical care for affected children and adults.
- Increase the participation of people with rare conditions in multi-centre research.