February 28th 2018 is International Rare Disease Day and Retina International is joining patient organisations, innovators, health professionals and policy makers all over the world to highlight the critical issue of Rare Disease Research.
Providing support for the development of research into rare forms of retinal blindness, also known as inherited retinal dystrophies or IRDs, has been a fundamental objective of RI and its membership since 1978. Retina International believes that one of the greatest barriers to prevention, diagnosis and treatment of IRDs is insufficient knowledge. Lack of investment in IRD research therefore can only lead to delays in scientific understanding resulting in under-diagnosis, misdiagnosis and delays in diagnosis.
We believe through structured multistakeholder collaboration, research into rare forms of retinal dystrophy can lead to the emergence of life changing treatments for people living with these conditions.
Rare Disease Day has become iconic as the global campaign for raising awareness of the impact that rare diseases have on the lives of patients and those who care for them.
A patient-led campaign, Rare Disease Day was launched by EURORDIS – Rare Disease Europe and its Council of National Alliances in 2008 and brings together millions of patients, families, carers, medical professionals, policy makers and members of the public in solidarity.
In 2018, organisations in over 100 countries and regions around the world are participating in Rare Disease Day by holding local events.
We wish our members and stakeholders a successful Rare Disease Day 2018 and best of luck with your local and national events. Most of all we hope that the global communities’ focus on promoting the importance of Rare Disease Research will resonate, leading to sustainable support for the development of appropriate infrastructures that will ultimately enable the emergence of therapies for those who urgently need them!
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