IRDCOUNTS: The Cost to Wellbeing when living with an IRD


IRDCOUNTS; The cost to wellbeing when living with an IRD

5pm CET, February 4th, 2021

Click here to register

Click here to view this article in Microsoft Word


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?

In line with our theme for 2021 – “Inclusion & Wellbeing”, Retina International will welcome a diverse panel of global perspectives that will shine a light on complex issues such as: care pathways, rehabilitation, self-care, and the mental health of those living with an IRD.


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The event

This one hour webinar will take place on February 4th 2021, from 5pm to 6pm CET on Zoom. There will be a Q&A session, and we encourage participants to email their questions or comments to either prior to or during the event. The chat-box and Q&A function in Zoom will not be operational during the webinar for accessibility purposes.


Professor David Keegan, Consultant Vitreo-retinal Surgeon at the Mater Misericordiae Hospital, Dublin, Ireland
Ms. Claudette Medefindt, Head of Science and Patient Services, Retina South Africa
Ms. Kari Brahman, Ophthalmic Genetic Counsellor, University of Michigan Kellogg Eye Center, United States
Mr. Alex Pepper, Head of Partnerships and Projects, Thomas Pocklington Trust, United Kingdom


The webinar will be recorded and made available on-demand and on our YouTube channel after the live event.

Please click here to register for “IRDCOUNTS; The cost to wellbeing when living with an IRD” taking place at 5pm CET on February 4th 2021.

Supporting Materials

The Cost of Illness documents are available on the Retina International “Know Your Code” portal Click here to view the full documents.

In case you missed it, click here to view the launch webinar on our YouTube channel, which took place on October 22nd 2020.


Speaker Biographies

David Keegan

Professor David Keegan is the Clinical Professor of Ophthalmology and Retina, in the UCD School of Medicine, University College Dublin. David is also a Consultant Vitreo-retinal Surgeon and Head of Department at the Mater Misericordiae University Hospital. He specialises in medical and surgical retinal disease including paediatric retinal surgery and diabetic retinal disease.


Claudette Medefindt

Claudette Medefindt is the Head of Science and Patient Services of Retina South Africa. Claudette is a trained peer counsellor and counsels newly diagnosed patients and families. She lectures extensively on Inherited Retinal Conditions. Claudette is partially sighted due to Retinitis Pigmentosa.


Kari Brahman

Kari Branham, MS, CGC is a Clinical Assistant Professor and Director of Ophthalmic Genetic Counselling at the University of Michigan’s Kellogg Eye Centre. She received her Master’s Degree in Genetic Counselling from the University of Michigan in 2002 and has been providing genetic counselling services to patients affected with inherited retinal degenerations since that time. She also serves as the patient coordinator for those receiving the Luxturna gene therapy treatment at the Kellogg Eye Centre. She is on the scientific advisory board for the Foundation Fighting Blindness and is the co-chair for the National Society of Genetic Counsellor Ophthalmology and Hearing Loss Special Interest Group.

Alex Pepper

Alex who is in his 30’s has been visually impaired his whole life after being diagnosed with Retinoblastoma at 14 months old.  Alex’s sight loss journey has taken many twists and turns at different points of his life, ultimately resulting in total loss of vision.  Alex is a guide dog owner who lives in London with his wife, step daughter and 8-month old son, and works full time as a head of department for a national sight loss charity.  His hobbies and interests include fitness and wellbeing, music, cooking and family time.

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