General | 20 September 2016

Welcome from our CEO

On October 11th 2018, we celebrate World Sight Day, an annual day of awareness held on the second Thursday of October to focus global attention on blindness and vision impairment

This year, the ‘Call to Action’ for World Sight Day is EYE CARE EVERYWHERE.

 

At the Sixty-first World Health Assembly in 2008, Member States requested that an action plan be developed that would address the eye-health agenda, and complement the existing Action plan for the global strategy for the prevention and control of non-communicable diseases, endorsed in resolution WHA61.14.

The World Health Organization (WHO) Secretariat developed a draft action plan for the prevention of avoidable blindness and visual impairment using an open consultative process, thereby benefiting from the valuable expertise and diverse experience of Member States and international partners.

The draft action plan was endorsed at the 124th session of the Executive Board in January 2009. Subsequently, the Sixty-second World Health Assembly adopted resolution WHA62.1 Prevention of avoidable blindness and visual impairment, building on previous related Health Assembly resolutions and endorsing the Action Plan for the prevention of avoidable blindness and visual impairment.

Here is a link to the action plan.

These advocacy activities reflect those of Retina International and its members across all continents. As an umbrella group of patient-led charitable organizations and foundations concerned with developing treatment for age-related and genetically inherited forms of retinal disease, we are all too familiar with the inequities that exist when it comes to access to eye care.

To address, this Retina International works with stakeholders across all disciplines including clinicians and scientists, policy makers and regulators as well as industry and all interested patient groups to find solutions.

In 2018, a global coalition of Vision and Aging groups formed ‘Action Retina, A Global Coalition for a Lifetime of Vision’. This special interest group (SIG) brings together like-minded NGOs who are concerned with the issue of access to screening programs, diagnosis, as well as rehabilitation and treatment for those living with conditions such as Age-related Macular Degeneration and Diabetic Eye Disease. The group is currently working on a web based toolkit to inform all stakeholders on the issue of Diabetic Eye Disease, and is also developing policy documents on the Essential Requirements for timely access to screening programs and diagnosis. For further information, please contact vicky.mcgrath@retina-international.org

At Retina International, we will soon launch a web based toolkit highlighting Inherited Retinal Diseases – IRDs. These genetically inherited conditions are some of the most complex, with over 260 causative genes described. The challenge for most patients, and those who provide their care, is in finding the appropriate information for their family. We hope that www.retina-IRD.org will provide our member organizations with the most up to date information on the disease causing genes, the clinical trial landscape and on the process of access to the ttreatments that are emerging. For further information, please contact sarah.mcloughlin@retina-international.org  

As IRDs are many and varied, we will start by focusing on the conditions LCA and Usher’s syndrome in October, followed by RPs, Choroideremia and Stargadts Disease in January 2018, followed by Achromatopsia, Retinoschisis and other allied conditions in April 2019.

The impact of disease is something that is important to understand, not only from the perspective of advocating for research and development but also to highlight the importance of treatments for those affected. Retina International has been commissioned by a consortium of charities and industry representatives lead by RP Fighting Blindness UK to develop a pilot study on the prevalence and impact of IRDs on children in the United Kingdom and Ireland. For further information, you can contact orla.galvin@retina-international.org

At Retina International we are always keen to hear from you and welcome your feedback on our work. Please do not hesitate to contact us if you have any questions or suggestions to make our communications more efficient and relevant to you.

We wish all our members and stakeholders a productive and successful World Sight Day 2018!

Avril Daly

CEO

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