Patient empowerment is one of the foundational pillars of Fighting Blindness, and we take very seriously our role as advocates for our members and for the 224,000 people living with sight loss in Ireland. We were founded in 1983 by a group of people who had been diagnosed with a retinal degeneration for which there was no known gene, no treatment option and very little information. Today, through the dedication, hard work, and joint efforts with scientists in Ireland and all over the world, we understand so much more and are on the cusp of developing treatments for some conditions. That is the definition of empowered patients; taking charge and changing their futures.
Advocacy in all its forms seeks to ensure that all people are able to have their voice heard on issues that are important to them, with their views being genuinely considered when decisions are being made about their situation, healthcare or future. We use the phrase “nothing about us without us” when describing this activity. Through advocacy, we aim to empower people living with sight loss, so that they have the opportunity to express their views and concerns and to access information which may be of benefit to them.
Health advocacy is at the heart of our work and we aim to stay at the forefront of all emerging health initiatives and activities. We are active in promoting a patient-centred philosophy and agenda with national institutions, as well as within the European Union and throughout international groups. We monitor all new policy developments and keep our members informed with the most up-to-date news on policy initiatives that affect you.
We are currently active in a number of policy and project initiatives including:
- National Vision Strategy
- National Plan for Rare Diseases
- Development of sustainable research infrastructures to enable the development of therapies for unmet medical needs
- Development of clinical trials infrastructure in Ireland
- Access to medicines for rare diseases (orphan drugs) when they become available
- Access to proven therapeutic interventions for chronic and common conditions
- Patient safety
- Health Technology Assessment (HTA)
- Patients’ rights in cross-border healthcare
- Health literacy