| 27 February 2017

Rare Disease Day 2017: Focus on Research


With research, the possibilities are limitless.

Patients around the world marked the 10th annual Rare Disease Day on Tuesday 28 February. Over the last decade, Rare Disease Day has become the centre point for a global campaign to raise awareness of rare diseases among politicians, policy makers and the general public at a national, regional and international level. It also reaches out to clinicians, researchers and pharmaceutical companies working in this dynamic area of health care.

Rare Disease Day is a patient-led campaign that EURORDIS-Rare Diseases Europe and its Council of National Alliances launched in 2008, with Retina International as a proud cotriubutor from the outset. Iindeed our global memership have been active and creative participants nationally, regionally and internationally each year. Our members have held hundreds of events over the years for patients, families, carers, medical professionals, policy makers and members of the public who join in solidarity – to ensure the issue of Rare Disease is a Public Health Priority!

The theme and slogan for Rare Disease Day 2017 is one that resonates with the Retina International community, “With research, possibilities are limitless”. For over four decades our community has highlighted the importance of rare disease research and on Rare Disease Day 2017  we call upon the researchers we support, their universities, students, clinicians, industry and policy makers to join with us to advocate for the much needed funding and resources that will aid critical discovery and development in Inherited Retinal Diseases, and to make all aware of the continued importance of research for these rare disease.

Too many people living with rare disease do not have the most basic answers to their questions, their searches yield no results. We know that research can lead to the identification of previously unknown genes and mutations and can increase understanding of disease. It can enable doctors to give a correct diagnosis and provide the information that empowers patients to understand their condition and its impact on them and their families.

In this age of development the impact of rare disease research on the emergence of potential therapies can be clearly demonstrated. But there is yet more to learn and understand if we are to acheive the goal of Rare Disease International and ‘leave no one behind’.

About Rare Diseases

Over 6000 different rare diseases have been identified to date, affecting over 60 million people in Europe and the USA alone. Due to the low prevalence of each disease, medical expertise is not always available, knowledge is scarce, care often inadequate and research limited. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research. Patient advocacy groups in the regions represented by Retina International including, the United States, South America, Europe, Africa, Asia  Australia and New Zealand will join toghether to raise the voice of people living with rare disesases in February 28th. 

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