Empower – Our Advocacy Work

Image of graffiti on wall saying we believe

At Fighting Blindness, the empowerment of patients and their representatives has always been a central goal.

 

We work in Ireland and on a global level to ensure the patients’ voice is heard in all decisions that affect us.

“Empowerment” is used in many different contexts and, depending on your work or lifestyle, can mean many different things. We empower ourselves through knowledge and experience, and through a collective voice which can enable a common goal.

At Fighting Blindness, empowerment is one of our three core pillars. We aim to cure blindness though our research endeavours and the development of therapies for unmet medical needs; we support our members through our Insight Counselling Centre and peer support initiatives; and we believe in the empowerment of those we represent through helping them understand the conditions that affect them, advocating for a better quality of life and enabling the development of treatments to facilitate those goals being met in the shortest possible time frame.

Helping to empower our members will benefit not only their well-being but also that of the community at large. Through our educational activities, policy initiatives and projects, we support the needs of our members. Through capacity-building initiatives and exchange of best practices and information, we support other stakeholders (including the scientific community, ophthalmologists, GPs, optometrists and those involved in biotechnology and pharmaceutical development) in the development of cures and treatments for blindness.

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 emerging policy developments, and through this new website we will 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:

• 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

Patient empowerment embodies all that we do in Fighting Blindness and reflects the very spirit in which the charity was established. In a display of patient power, a group of people affected by conditions causing sight loss did not accept a diagnosis of impending blindness and explored the possibilities in research. When our founders made the initial decision to investigate how gene therapy could affect their conditions, they came together despite the harsh recession of the 1980s and raised enough to start a project that would lead to the discovery of the first gene responsible for RP. Now, just thirty years later, we are on the cusp of many treatments and potential cures.

The ripple effects of this research and the projects that we have funded since–over 70 in all, amounting to €15 million in investment–should not be underestimated. And while we support work primarily in Irish institutions, the impact of our research is felt globally. Now our advocacy is focused on furthering our research efforts through investment by public and private means.

Fighting Blindness is seeking patient representatives to represent the voice of their peers at the local, national and international levels. We believe there should be ‘Nothing about us without us’, and so we should be active at all levels of policy development that concern our activities.

If you want to join us, please contact empower@fightingblindness.ie and we will provide you with the tools to make your voice heard. By working together, we will achieve a bright and hopeful future.