Avril Daly is CEO of the patient-led global umbrella organisation, Retina International, which represents the voice of charities and foundations concerned with the promotion of retina research and related health policy in 43 countries.
Avril has worked in health policy for rare and common eye disease since 2000 and was CEO of the Irish NGO, Fighting Blindness for eight years. She was Chairperson of Rare Disease Ireland from 2006-2019. In 2009 she was elected to the Board of Directors of Rare Disease Europe – EURORDIS, and has been the organisations Vice-President since 2012.
In 2011 Avril was appointed by the Irish Minister for Health to a steering committee working towards the development of the Irish National Plan for Rare Diseases. The plan was published in 2014. She was appointed to the Irish Clinical Programme for Rare Diseases at the Health Service Executive (HSE) in Ireland in 2014 and was recently appointed to the Rare Disease Technology Review Committee and the National Centre of Pharmacoeconomics (NCPE) to review orphan therapies that fail initial Health Technologies Assessment (HTA) for statutory reimbursement.
Avril has held board positions with the European Patient Forum, The European Platform for Patient Organisation Science and Industry (EPPOSI), the HRCI (formerly Medical Research Charities Group) in Ireland and IPPOSI, the Irish Platform for Patients Organisation Science and industry. She believes that patients have a critical role to play in aiding the development of appropriate interventions from concept to delivery.
Avril holds a Bachelors Degree in Business and International relations, she is affected by Retinitis Pigmentosa.
Dr. Orla Galvin is the Director of Research Policy at Retina International.
Orla has led a first-in-kind pilot study in Ireland and the UK, to better understand the impact of Inherited Retinal Disease on patients and families in these countries through literature review, and patient and carer survey. The learnings from this work have proven invaluable and have guided Orla in directing additional projects assessing the patient/carer and clinical perspective in other retinal disease areas in other countries.
Orla serves on the organisation committee of the Retina Youth Programme for the Retina International World Congress 2022, and acts as an advisor to the Retina International Youth Council.
Orla believes in continuous education and raising awareness of retinal conditions. In 2017 Orla co-ordinated the University College Dublin Inherited Blindness Summer School; and in 2018 she designed and developed the content for the Diabetes-related Eye Disease toolkit www.retina-ded.org which launched in January 2019. This educational site aims to provide timely, relevant and accurate information to patients and their families and professionals (Eye Care Professionals, Advocates, etc.) on Diabetes-related Eye Diseases (DEDs).
Orla is co-ordinator and moderator for the CME accredited Retina International ARVO 2020 education course on patient data “Patient Data: Recognition, Evaluation, Incorporation and Practice”. Orla took part in the first ever ARVO online event “Artificial Intelligence in ocular medicine: Seeing into the future” and is developing an education tool to create awareness of the advances and benefits AI can bring to the patient and to health care systems across the globe.
Orla came to Retina International with a background in academic and industry vision research. Orla is a Pharmacology graduate from University College Dublin with a PhD in Medicine from Queen’s University Belfast. Orla has won the Geraldine Duggan Young Investigator award and the SFI/TIDA venture training programme award.
During her postdoctoral career, including Wellcome Trust, and Marie Curie Fellowship positions, Orla’s research interests included drug discovery, design and delivery in academic and industry settings in Ireland and the UK. Orla continues to build upon her background in ocular therapy development, education, and inter-sector communication through Retina International, and believes optimal care and progress can be achieved through a multi-stakeholder approach.
Fiona Waters is the Education & Engagement Manager for Retina International and is based in Dublin, Ireland. Fiona has a degree in Molecular Medicine, and a strong background in fostering multi-stakeholder communities through science education, communication, and public engagement.
In addition to overseeing the Community Engagement, Education, & Capacity Building aspects of Retina International’s work, she is also the Project Manager of the Retina International Education Hub, and coordinates the Retina International Youth Council.
Petia Stratieva is Founder and Chairperson of Retina Bulgaria and a member of the ePAG at ERN-EYE.
Petia joins Retina International as an MD with a specialty in Immunology from the Medical University in Sofia, Bulgaria and holds a Ph.D. in Molecular Biology from the Shemyakin & Ovchinnikov Institute of Bio-organic Chemistry of the Russian Academy of Science in Moscow, Russia.
With over 10 years experience in Research and 20 years in the Pharmaceutical Industry in various managerial and multicultural roles and a strong focus on public & governmental affairs, policies implementation and people development, Petia offers a wealth of experience to the Retina International team.
Petia also has personal experience of living with Retinitis Pigmentosa, being diagnosed at the age of 25.
Kelly McVicker is the Administrator for Retina International, based in the Dublin office.
Kelly has been in the charity sector for over 8 years providing support to clients and members alike.
Her previous roles have included working for Active Retirement Ireland and Dublin Simon Community. Initially working in donor care, her growth in her role has now allowed her to work in Communications, Fundraising, Member Support and also aspects of Finance. Her enjoyment of the sector has allowed her main focus has been on member’s communication and maintenance of information, striving to bring better facilities and understanding to the charity sector to those that need it.
Dana Hufe is the Communications Officer for Retina International and the newest addition to our team. With a Communications degree from the University of Delaware, she has experience working in a number of nonprofits including the Delaware Museum of Natural History and the Delaware SPCA.
Having lived and worked in the U.S, Austria, and Spain, Dana is now based in Dublin and has just completed her MFA in Creative Writing. She strives to bring a creative edge to all her work and enjoys working in an international environment. Dana is passionate about promoting the personal perspective behind Retina International’s mission.