Today Sunday, September 26, is celebrated on World Dayial of the Retina, an ephemeris driven by the patient associations that make up the International Retina Association -In our country, the Federation of Associations of Hereditary Retinal Dystrophies of Spain (FARPE), member of We are patients– to inform and raise awareness about retinal diseases, especially hereditary retinal dystrophies (DHR), rare diseases that produce a serious decrease in visual ability and that, ultimately, can lead to blindness.
As Franz Badura, president of Retina International, explains in his communicated by World Day, “The enormous negative impact of COVID-19 on the investigation and the scientific community has committed the development of clinical trials and treatments for those living with retinal diseases. We consider that, with the priorization and protection of research by policy makers, the scientific community can overcome this situation and be able to make up for the inevitably lost time with new findings clinical and scientific ”.
Science: victory is possible
In his Manifesto ‘Science, our safest value’ for the anniversary, FARPE and its Fight Against the Foundation Blindness (FUNDALUCE) want to value the investigation and the innovation as engines of illusion and hope in times that were certainly turbulent as a result of the pandemic of COVID-19.
As Almudena Amaya Rubio, president of FARPE and FUNDALUCE indicates, “this 2021 has been marked again by the coronavirus cruelty, but also due to the advancement of vaccination that, little by little, he takes us out of the abyss and isolation in which he had installed us. Science has shown that it may be the most relevant and safe value of our society, and researchers around the world have gone out of their way to prevail over a enemy tiny and invisible, but tremendously evil. Scientists have shown that no matter how hard and pressing the fight is, with commitment, effort and dedication, the victory it’s possible”.
In fact, science has made it possible that, despite the current situation, the Federation can celebrate the implementation in our country of the primer effective treatment for a DHR, which although “benefits only a few affected by a gene concrete, the ‘RPE65’, is a first giant step toward future treatments, some of which are already quite advanced ”.
Likewise, FARPE also clap your hands the approval by the Government of the creation of two Service Centers and Reference Units (IT IS SAFE) of DHR, long demanded by the associative movement and that, located in Barcelona and San Sebastián (Guipúzcoa), represent the beginning of a succession of new centers similar for the rest of the national geography.
It’s more; Through its Manifesto, FARPE, responsible together with the Carlos III Health Institute (ISCIII) of the creation and promotion of Patient Registration from Rare Eye Diseases, also demands the implantation in the hospitals of our country of the specialty of Clinical genetics, already present in most countries of the European Union.
As Almudena Amaya Rubio concludes, “there will always be difficulties and barriers to overcome, in the form of viruses or of any other kind, but we will always be there, determined to fill everyone’s path with light. To the researchers, to whom we can never to thank enough your efforts and sleeplessness to love heal usWe ask you to continue awakening our illusion and our hope. We ask local, regional and national authorities to contribute the means and the financing, so that our optimism is not truncated. And we patients have to get more and more involved so that our voice sounds louder and farther. Because we are still at the beginning of the road, but we have already started move along with giant steps ”.
For read the manifesto click here.
– Today, 17 patient associations dedicated to eye disorders They are already active members of We Are Patients. And yours?