January 12th, 2021
14.00 – 15.00 CET
Please note, this is an on-demand webinar. After the webinar, registration will stay open and anyone who registers will receive a link to the recording.
Retina Action is a global coalition of civil society organisations, including non-governmental organisations and professional associations, concerned with vision health, ageing, caregiving, medical research and the delivery of appropriate and timely treatment options to patients affected by conditions of the ageing retina.
On January 12th, 2021, the Retina Action coalition will launch a Call to Action for the ageing eye on the theme of Inclusion & Wellbeing. Here, we will 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 are hosting a panel discussion on the wellbeing and inclusion of the ageing community living with low vision in our society.
Joining us on the panel will be:
Dr. Orla Galvin – Director of Research Policy, Retina International
Dr. Keith Gordon – Chair of Retina Action, and Senior Research Officer of the Canadian Council of the Blind (CCB)
Karen Denton – AMD Ambassador for Retina South Africa,
Mike Smith – President of Retina New Zealand
Daniela Brohlburg – Counsellor & Retinal Dystrophy patient advocate, PRO RETINA Deutschland e.V.
Dr. Juliana Sallum – Board Certified Ophthalmologist and Geneticist, UNIFESP, Brasil
About Retina Action:
Retina Action is a coalition of vision and aging groups representing the voice of people affected by vision loss and the aging population. The partnership has worked together informally for many years and in 2017 decided to formalise and develop a work stream to assist in its objectives of improving awareness of conditions such as Age-related Eye Disease, AMD, Geographic Atrophy, GA and Diabetes-related Eye Disease, DED.
In late 2017 they launched retina-amd.org, a toolkit designed to provide the most up to date scientific information and therapeutic developments in the area of AMD. This information was developed for the members of the patient bodies that make up the coalition to use not only in their local communications and advocacy work but also to ensure those affected or at risk of developing these conditions were up to date on the latest scientific advances, therapy development and rehabilitation services.
In January 2019 Retina Action launched retina-ded.org, a toolkit that provides high quality information to those at risk and affected by Diabetes-related Retinopathy, Diabetes-related Macular Edema and other diabetes-related eye diseases, a group of very complex conditions, to equip advocates with the information they need to educate policy makers on the importance of screening for this degenerative retinal disease.
For 43 years, Retina International (RI) has been the voice of patient-led voluntary groups, charities and foundations worldwide who fund and support retinal research that is seeking a cure for inherited and age related forms of retinal diseases.
Millions of people all over the world are living with severe vision loss, a significant proportion of which is due to retinal degenerations. For individuals and families who have been diagnosed with a retinal dystrophy, be it rare, genetic and inherited, or age-related, access to relevant, detailed and clearly understandable information is essential.
Retina International strives to improve the lives of these people living with retinal conditions by making this information timely, accurate and accessible. Additionally, we lead and support national and global evidence-based advocacy campaigns to improve healthcare and treatment access for people living with retinal conditions.
Founded in 1908, Prevent Blindness has become the US leading volunteer eye health and safety organisation dedicated to fighting blindness and preserving sight. Focused on promoting a continuum of vision care, Prevent Blindness touches the lives of millions of people each year.
International Federation of Ageing
The International Federation on Ageing fondly known as “IFA” is an international non-governmental organization (NGO) whose members are government, NGOs, academia, industry, and individuals in nearly 80 countries. IFA believes that all these members working together are essential to help shape and influence policy and good practices.
IFA stands to drive the agenda for the world’s population ageing. We are proud to have general consultative status at the United Nations. The International Federation on Ageing is a non-State actor in official relations with the World Health Organization (WHO).
Canadian Council for the Blind
The Canadian Council of the Blind (CCB) is a membership-based not-for-profit organization that brings together Canadians who are blind, deaf-blind or living with vision loss through chapters within their own local communities to share common interests and social activities.
CCB works to improve the quality of life for persons with vision loss through awareness, peer mentoring, socializing, sports, advocacy, health promotion and illness prevention.
Blind Low Vision NZ
Blind Low Vision NZ believes everyone who is blind, deafblind, or has low vision should have the opportunity to be self-reliant and do the things they need and want to in life. As well as supporting individuals, Blind Low Vision NZ seeks to make big-picture change by advocating for inclusive communities and for optimal eye care services for all New Zealanders.
European Council of Optometry and Optics
The European Council of Optometry and Optics (ECOO) is the European organisation which represents the interests of optometrists and opticians from 24 countries. It aims to promote eye health to the public across borders and to harmonise clinical and educational standards of optometric and optical practice throughout Europe.
Retina Action is supported through an educational grant from Janssen Global, Novartis Pharma AG, and F.Hoffman LaRoche.