Nothing About Us Without Us

National Rare Diseases Steering Group with Dr James Reilly beside Fighting Blindness CEO Avril Daly

The patients’ voice must be front and centre in the development of policy. This is vital in order to gain consensus on issues that will affect them, their families and their future. Fighting Blindness will continue to represent that voice in order to fulfil our vision of empowering patients.

At Fighting Blindness, the empowerment of patients and their representatives has always been a central goal. Since our inception, we have worked with like-minded stakeholders in Ireland, throughout the EU and globally to ensure the patients’ voice is heard in all decisions that affect us: Nothing About Us Without Us. We were instrumental in the development of and continue to work with umbrella groups such as the MRCG, GRDO and IPPOSI in Ireland. We represent our constituency on the boards of major EU groups such as the EPF and EURORDIS. Currently, we are developing a professional secretariat for Retina International.

As research advances, it becomes a truly global effort to develop treatments and bring them to the market, so it is fair to say our real work starts here. We must educate ourselves and our patients, members and friends to ensure that our voice is as strong and as respected as other fields of health in the development of policy around access to medicine and research infrastructures. We are working to make existing treatment options accessible to all patients affected by sight loss and advocate for better and equitable access to novel therapies and appropriate care. We will join scientific experts, industry partners and regulators to build consensus and develop policy through a transparent and balanced Health Technology Assessment process. We are working on the establishment of an expert group to create a clear pathway towards a realistic outcome.

In the interest of patient safety, we advocate for the patient voice in relation to decisions on pharmacovigilance, relative effectiveness and significant benefit in discussions on the regulation of novel therapies. We continue to work with stakeholders in the development of working groups and ensure patient involvement in activities and general discussions.

We aim to inform the public on the importance of early diagnosis and make blindness a public health priority in the context of a national vision strategy. We must work with policy makers and government to promote awareness and collaborate with national and international partners on targeted education programmes and promotion of good eye health.

We want to significantly reduce the risk of developing blindness caused by lifestyle choices. We must enable our members to stay up to date with national and global research developments from basic science through to the clinic. We will use our website, resources and collateral as first information point. There are many established awareness campaigns and outreach programmes; these must be underpinned and supported more widely in order for our collective voice to be understood and our advice acted upon.

The facilitation of patient involvement in policy development is essential. Our members should be aware of EU directives and national consultation processes so that they can be included in the development of decisions that concern them. We will provide patients with the opportunity to be involved as active participants in policy groups and committees.

“224,000 Irish people are affected by severe sight loss, representing one of the largest health constituencies in the country. However, the impact of sight loss is not well understood among the general public or policy makers. Fighting Blindness is at the front line in making sure that those affected by conditions causing sight loss are supported, that research that has the potential to treat their conditions is developed and that access to emerging treatments is a reality.” – Avril Daly, CEO of Fighting Blindness

In the early days of Fighting Blindness, we were primarily concerned with rare and genetically-inherited forms of blindness, such as RP, Stargardt disease and Usher’ syndrome. However, as our research portfolio has grown, so too has our membership—it now includes those living with forms of retinal degeneration through age-related disease and other health conditions like diabetes and glaucoma.

This diversity has brought new challenges and new opportunities to raise our voice. Fighting Blindness became the Irish representative for Retina International, the umbrella group for organisations funding and supporting research. We then joined the European Organisation for Rare Diseases (EURORDIS), one of the largest patient umbrella groups in the EU, supporting large and very small organisations across Europe and advocating for national plans and strategies to improve the lives of all of those affected by rare diseases.

Fighting Blindness and was elected to the board of EURORDIS in 2009. In so doing, we became the first Irish group to hold a position on the board and have held the vice presidency since 2012. We are also represented on the board of the European Patients Forum (EPF). Through our involvement with EPF, we are particularly active in policy development on issues such as aging and chronic disease, clinical trials, access to appropriate medicine and personalised medicine.

In Ireland, we currently hold the chair of the Genetic and Rare Disorders Organisation (GRDO) and the chair of advocacy at the Medical Research Charities Group (MRCG). We are also represented on the board of the Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI), so we are everywhere that we should be to ensure that the needs of our patients and members are front and centre.

As our research grows and develops, we need more patient representatives to become involved. If you are interested in getting involved, please contact us today by calling 01 6789 004 or by emailing empower@fightingblindness.ie. We would love to hear from you.