A future where everyone affected by PMR or GCA receives fast, effective treatment and the best quality of life.
To inform, support and connect people with PMR and/or GCA to improve their quality of life. To facilitate developments in diagnosis, treatment and research. To be the “go to” destination for information and patient representation, and specialist on the PMR/GCA patient experience.
Our Strategic Aims
- To increase awareness of PMR and GCA, and their symptoms, diagnosis and treatment, targeting people with the conditions and their families, carers and health professionals.
- To reach and support more people affected by PMR and GCA, providing user-centered services and information.
- To support research into PMR and GCA, facilitating new understanding of causes and improved diagnosis and treatments.
- To invest in the charity to ensure a sustainable future.
We are a small charity with only four part-time members of staff, and a number of fantastic volunteers. But we certainly punch above our weight. We have achieved so much since we were set up by a group of patients in 2008
- Built a network of support groups around the UK to enable people to meet face to face.
- Grown our Telephone Helpline service run by volunteers to reach over 600 callers every year, answering questions and offering support.
- Given regular training and support to our Telephone Helpline volunteers.
- Established a forum (HealthUnlocked) with over 3000 active members providing support for each other.
- Campaigned to raise awareness with the national media and provided stories for journalists to feature PMR and GCA.
- Provided the patient voice at medical consultations, such as NICE, and most recently for the consultation of a the new drug Tocilizumab.
- Worked with the British Society of Rheumatologists (BSR) and other bodies to introduce new guidelines for PMR and, more recently, GCA to standardise diagnosis and treatment.
- Campaigned nationally for a fast-track diagnosis for GCA to prevent blindness. Up to 2000 people a year start to lose all or some sight as a result of GCA.
- Run a successful research Roadshow, funded by the Wellcome Foundation, to highlight new research and to build a network with the research community.
- Innovated to develop new services – such as our new Phone Friend Service to offer telephone befriending support for the most isolated individuals.
- Supported GP education, including funding research, to ensure GPs are more aware of GCA and PMR conditions that they come into contact with infrequently.