Advocacy: Who, What, When, and Why?
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The Cost to Wellbeing when living with an IRD
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Retina Action: Call to Action Launch Webinar
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"Bench to Bedside: The journey to creating a sight-saving drug" with TransMed
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US & Canada IRD Cost of Illness Study, A Panel Discussion
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COVID-19 Webinar: A Unified Voice for the Ageing Community
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This hour-long webinar explores the process of participating in health advocacy; gathering and generating evidence, and building networks and coalitions. Joining us on the panel were: Clara Hervas, Public Affairs Manager, EURORDIS and Rare Diseases International Sara Brown, Director of Government Affairs, Prevent Blindness USA.
This hour-long webinar explores the process of participating in health advocacy; gathering and generating evidence, and building networks and coalitions. Joining us on the panel were: Clara Hervas, Public Affairs Manager, EURORDIS and Rare Diseases International Sara Brown, Director of Government Affairs, Prevent Blindness USA, and Dimitar Yonchev, Youth Patient Advocate, PRO Retina Deutschland e.V. To view the Retina International Advocacy toolkit, visit our website: https://retina-international.org/…and Dimitar Yonchev, Youth Patient Advocate, PRO Retina Deutschland e.V. To view the Retina International Advocacy toolkit, visit our website: https://retina-international.org/…
On World Sight Day, 2020, Retina International published a Cost of Illness study outlining the economic burden of IRDs in the US and Canada. This was the second publication in our suite of IRDCOUNTS studies, following a pilot study carried out in the UK and Republic of Ireland in 2019.
Amongst many key findings from these studies, one stood out above all: across all four countries studied to date, “wellbeing” has consistently ranked as the largest cost to those who live with an IRD. The scale and significance of these findings has warranted further discussion on what is a clear and urgent unmet need for the IRD community.
So, how do we define wellbeing? How were these costs calculated? What factors are making such a significant impact on the wellbeing of those living with IRDs – and how do we mitigate them?
On January 12th, 2021, the Retina Action coalition launched a Call to Action for the ageing eye on the theme of Inclusion & Wellbeing.
Here, we call upon governments around the world to collaborate with patient and advocacy organisations to develop new, and implement existing public policy actions that address the inclusion and access of older visually impaired citizens as equal members of society. To mark the launch of this call to action, Retina International hosted a panel discussion on the wellbeing and inclusion of the ageing community living with low vision in our society.
A series of bite-size talks by Early-Stage Researchers from the TransMed consortium, that will take us through the step-by-step process of drug development, clinical trials, and beyond. This webinar is ideal for those living with a Retinal Degeneration, or for those who are simply curious about learning the start-to-finish process of translational medicine, and the story of life changing research.
On Thursday October 22nd, 12.00 EST, Retina International were delighted to host a webinar discussing the key findings and impacts of our new groundbreaking US & Canada Cost-of-Illness Study.
On September 3rd, Retina International hosted a multi-disciplinary panel exploring the impact of COVID-19 on the ageing patient community, particularly those living with visual impairments and neurological conditions.