WORLD RETINA DAY 2024
September 29, 2024
On World Retina Day 2024, we want to be more and more visible.
As every year, the Federation of Associations of Hereditary Retinal Dystrophies of Spain (FARPE) and its Foundation for the Fight Against Blindness (FUNDALUCE) celebrate World Retinal Day on the last Sunday of September. This year, once again, we intend to illuminate the facades of town halls throughout Spain in blue and green. To this end, we have launched the second edition of our campaign “Lights that inspire: Spain illuminates the retina” to which we intend to have the largest number of municipalities throughout the country join. With this, we want to make visible a whole range of diseases, many of them degenerative and rare, that affect the retina and cause Low Vision or blindness to many people and claim what our needs are to the whole of society.
Because you can only face a problem when you know it and visual impairment and Low Vision in particular are great unknowns for the society in which we live.
Achieving this goal is not an easy mission and of course FARPE and FUNDALUCE alone will not be able to ACHIEVE it if they do not work hand in hand with their alliances such as Retina International, an umbrella organization of entities that represent those affected by retinal pathologies in the world, but also with other organizations at the national level such as the National Organization of the Blind (ONCE) or the National Observatory of Rare Ocular Diseases (ONERO) and other organizations that fight for the rights of people with rare diseases such as the Spanish Federation of Rare Diseases (FEDER), Rare Diseases Europe (EURORDIS) or Rare Disease International (RDI), because together we are stronger and we can make our demands be taken into account.
In this sense, aligned and in coordination with these organizations, we demand the implementation of a plan for rare diseases at the national level, since the 2009 strategy and whose last update is from 2014 is totally obsolete. We demand that the European Union approve, in turn, a European plan for these diseases in this recently inaugurated legislature and also that the World Health Organization approve a resolution on rare diseases in 2025 and begin the development of a global action plan that obliges all countries in the world to take measures to better address rare diseases.
And the fact is that the demands that year after year we have formulated from FARPE and FUNDALUCE, despite the progress made, are still mostly in force and the plans at national, European and global level will contribute to accelerating their achievement. It should be remembered that Hereditary Retinal Dystrophies (RDH) are low-prevalence pathologies that would benefit from these plans, as well as basic and clinical research in other more prevalent diseases such as Age-Related Macular Degeneration (AMD) or Diabetic Retinopathy (DR), contributing to their better treatment.
Therefore, together with our effort to make this set of diseases and the social and economic consequences they cause in families increasingly visible, we continue to demand from the competent administrations measures that help improve the quality of life of those affected and their families and that promote research into these pathologies. Other of our demands continue to be:
- That the clinical and genetic information of those affected is accumulated in a large registry to help research and improve the access of those affected to clinical trials and future treatments.
- Equitable access to the diagnosis, monitoring and treatment of these diseases, through the Reference Centres, Services and Units (CSUR) and the European Eye Reference Network (ERN EYE), promoting collaborative and coordinated work that improves the experience of professionals and therefore health care and clinical research.
- We continue to ask for the approval of the specialty of genetics in our National Health System (SNS) which will improve access to genetic studies, to which those affected by DHR are entitled by law, and the time to obtain a diagnostic confirmation.
- That the NHS approves and finances as soon as possible those treatments that stop the progression or cure these pathologies.
- Promote and support medical and social research, since only in this way will the time to achieve new treatments be shortened and at the same time we will have data that will improve the quality of life of individuals and families.
And in the meantime, the people who make up the great FARPE and FUNDALUCE family will continue to fight against blindness as we have been doing for more than 30 years.
