Advocacy and Empowerment Update

Understanding and Awareness Creates Opportunity

We act as advocates when we represent our members. This includes raising awareness about retinal blindness among the general public, running education campaigns, speaking on behalf of patients affected by sight loss and trying to influence change at every level, for the benefit of our members.

Our key objective at Fighting Blindness is to develop accessible therapies to treat and cure sight loss. This involves supporting research initiatives, so we are working on ways to fund existing programmes while establishing new projects that will expedite the process. It is important to understand that funding research is but one element. We also need to support our advocacy work to ensure that the voice of those affected by sight loss is heard in every step of that process. This means making sure that trials are designed with the best outcome for vision-impaired patients in mind and engaging early with those developing potential treatments as well as the bodies responsible for approving market access and reimbursement.

In January, we attended an event organised by the Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI), where representatives from the National Centre for Pharmacoeconomics (NCPE) presented on Health Technology Assessments (HTA) for Patient Leaders. This event provided insight into the decision-making process on how a therapy reaches the market and the criteria for reimbursement by the state. It also provided a platform for fruitful engagement and discussion between patient leaders and HTA professionals.

Our CEO, Avril Daly, represents patients with genetic and rare disorders at the National Steering Committee on the Development of a National Plan for Rare Diseases at the Department of Health, and has been appointed to the National Clinical Programme on Rare Diseases Working Group at the HSE. She also represents Fighting Blindness members on the National Coalition for the Development of a National Vision Strategy and met with Dr James Reilly TD, Minister for Health, in January to seek his support for implementing a strategy that will coordinate the care of people affected by sight loss and requiring particular ophthalmic care.

If you would like to learn more about the ways you can get involved in our advocacy opportunities, please visit the Empower section of our website or contact us at 01-6789 004 or info@fightingblindness.ie.