Webinar: IRDCounts – US & Canada Cost-of-Illness study, A Panel Discussion

Thursday October 22nd, 12.00 EST


Registration: https://zoom.us/webinar/register/WN_d-J5WdjqSquffquDNgtqbA



IRDs are rare diseases, and the number of people affected by these conditions, and their impact on the greater population has remained largely undocumented – both at a national and global level.

In addition to vision loss, IRDs can affect patients, their families, and caregivers in a number of ways – including financial burden and poorer wellbeing. However, there is a lack of holistic data that represents these far reaching impacts. This in turn hinders the development and funding of supports, clinical services, treatments, and clinical trials for IRD patients.

To address the large data gap surrounding the impact and occurrence of IRDs, Deloitte Access Economics was engaged by Retina International, together with a consortium that included patient-led organisations and industry partners. The consortium partners involved in this study were: AGTC, Fighting Blindness Canada, Foundation Fighting Blindness USA, Janssen Global, Novartis Pharma AG, and Retina International.

The study carried out aimed to estimate the societal disease burden, and economic impact of IRDs in the United States of America (USA) and Canada – a cost-of-illness study. This study collected data from patients in the form of surveys.

Here are some key data:

  • IRDs in the USA and Canada resulted in a socio-economic burden of up to US $31.7 billion and CAN $1.6 billion respectively in 2019.
  • Two thirds of these costs were associated with wellbeing costs; up to US $20 billion (63%) in the US, and CAN$1 billion (66%) in Canada.
  • Productivity costs (cost relating to employment) were the second highest burden in both the USA and Canada, amounting to US $4.056 billion (14%), and CAN $205.1 million (13%), respectively.
  • The third highest cost was attributed to informal care – 8% of the total cost in the US, and 10% in Canada. This accounts for assistance with domestic tasks such as cooking and cleaning, organising and administering medication, shopping, transport, and monitoring wellbeing.




On Thursday October 22nd, 12.00 EST, Retina International are delighted to host a webinar discussing the key findings and impacts of this groundbreaking US & Canada Cost-of-Illness Study.

The Webinar will last approximately 1.5 hours, and will consist of short presentations followed by a Panel Discussion and Q&A Session.

Joining us on the panel will be:


Dr. Orla Galvin – Retina International


Mr. Doug Earle – Fighting Blindness Canada

Dr. Todd Durham – Foundation Fighting Blindness

Ms. Allison Galloway – Patient Representative

Dr. Rob Koenekoop – Clinical/Research Representative, Montreal Children’s Hospital


Registration for this event is free and open to the public. Please register via Zoom at the following link: https://zoom.us/webinar/register/WN_d-J5WdjqSquffquDNgtqbA


We look forward to welcoming you!


Speaker Biographies:


Dr. Orla Galvin

Dr. Orla Galvin is the Director of Research Policy at Retina International where she has oversight on the day-to-day running of research, educational, and advocacy programs.

Orla’s background includes a BSc in Pharmacology from University College Dublin, Ireland; and a PhD in Medicine from The Queen’s University Belfast, UK, which focused on Retinopathy of Prematurity.

Throughout Orla’s post-doctoral career Orla held SFI/TIDA, HRB/MRCG and the prestigious Wellcome Trust and Marie Sklodowska Curie Fellowships. Orla’s post-doctoral work focused on drug discovery and design for the treatment of Diabetes-related retinopathy and wet Age-related Macular Degeneration in academia and industry in Ireland and the UK, and extended to the area of cardiovascular complications of Diabetes before returning to her passion- working for the preservation of vision.

To this end Orla’s work with Retina International has included leading consortia of patient organisations, clinician, and industry partners to develop cost-of-illness studies for the Inherited Retinal Disease population. Orla is hopeful that with access to treatments and improved care pathways, the burden measured now will be greatly reduced in the years to come.

Doug Earle

Doug Earle serves as President & CEO of Fighting Blindness Canada since December 2018.  A Certified Fundraising Executive with a proven track record of success, Doug engages Canada’s vision community to accelerate vision research to discover new treatments and cures for blinding eye diseases and improve access of treatments and vision health care across Canada.

Doug is a motivating, tireless yet inspirational Fundraising Executive, politically astute, a translator of science and missions to engage donors to spark innovation that impact lives. Known for inspiring philanthropists to invest over $1 billion+ in organizations helping those in need and rejuvenating communities.

With years of expertise in a wide range of development leadership positions, Doug has rallied and strategically guided teams of organizational leaders and volunteers in health care, higher education, public television and community organizations to lead accelerated growth. In his last 3 capital campaigns, he doubled revenue in record timeframes.

Doug has held progressively senior positions at CAMH, UHN, Wilfrid Laurier University, Canadian Diabetes Association, Canadian Hemophilia Society, Canadian Cancer Society, TVOntario, The Arthritis Society and Brock University, successfully translating health research and education programs into philanthropic opportunities and social impact.

photo of doug earle

Todd A. Durham, MS, PhD

Todd Durham is the Vice President, Clinical & Outcomes Research at the Foundation Fighting Blindness, a national non-profit that funds research to treat and cure inherited retinal diseases. In his current role, Todd is responsible for directing the Foundation’s Clinical Consortium of retinal experts, developing strategies to enhance product development, partnering with industry, and providing technical input on partnered programs and investment decisions.  Todd has over 25 years of drug development experience. Prior to his current position, he contributed to research on numerous marketed products as Director of Biostatistics with IQVIA’s Real World Evidence Solutions, was a doctoral fellow with Bristol Myers Squibb, and worked in various statistical and leadership roles for Novan, Inspire Pharmaceuticals, Quintiles, and as a self-employed consultant.  Todd earned a BSPH and MS in biostatistics and a PhD in health policy and management (Decision Science and Outcomes Research) from the UNC Gillings School of Global Public Health.

Allison Galloway

Allison Galloway is the proud mother of two children, Logan, age 9, and Zoe, age 7, who have both been diagnosed with Leber’s Congenital Amaurosis 13 or RDH12.

Allison is a Nurse Practitioner, Surgical Assistant, and Masters prepared nutritionist.  She lives with her two children and husband in Westminster, CO.



Dr. Robert Koenekoop

Dr. Robert Koenekoop (Rob) was born in Stockholm Sweden, but went to High school and the University of Utrecht in The Netherlands. After Bachelor’s and Master’s degrees in Biology, Vegetation Science and Population Biology, a Fulbright fellowship from Amsterdam brought him to the USA for a PhD in Molecular Biology. His wife then brought him to Quebec, Canada and Medical school studies at the University of Toronto and McGill University followed. He saw the light in the retina clinic and finished his residency in Ophthalmology at McGill and his Ocular Genetics and Paediatric Ophthalmology Fellowships at Johns Hopkins University.

For the past 25 years he has devoted his research career to discovering new retinal genes for childhood blindness due to retinal degenerations. For the past few years he is testing the safety and efficacy of new therapies for inherited retinal degenerations, with some very important early successes. He has a broad background in human clinical trials and drug development, molecular genetics, clinical and paediatric ophthalmology, retinal degenerations, childhood blindness research and data analyses. In the past few years, in international collaborations, he has been able to discover 15+ new genes for childhood blindness due to retinal degenerations. This work was supported by grants from NIH (NEI), CIHR, Fighting Blindness Canada, The MCH foundation, Telethon of stars, the FRSQ and Reseau de Vision. This led to the publication of 140+ peer-reviewed papers.

He is now the principle investigator (PI) at McGill, the Montreal Children’s Hospital and the MUHC Center for Innovative Medicine (CIM) for 7 human clinical trials to test new drugs, new genes, new genetic methods and other modalities to combat blindness due to photoreceptor diseases. At McGill University he is currently Professor of Pediatric Surgery, Human Genetics and Adult Ophthalmology. In his free time, he bikes 365 days per year, reads historical fiction and keeps a plant based diet.

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