Meet the Team

Christina Fasser
President

Christina Fasser has been a leading voice in the effort to focus attention on the need for scientific research to find a cure or treatment for retinal blindness for the past 25 years.

Diagnosed with RP when she was thirteen, Christina discovered early in life the reasons for her clumsiness in the dark and her inability to compete in sport. Contrary to the expectations of her parents, Christina was not bothered at the time by this tragic news as it gave an explanation for what she was experiencing.

It was later in life, when choosing a profession, that the greater effect of the condition was felt as she was unable to follow her dream career path. Through determination she has been successful in her career and has risen to a highly respected position in the retinal research community.

Speaking of her vision loss, she says, “The two things I miss most of all are not being able to see the expression on people’s faces when I speak to them and the ability to read print… Still, I believe that there has never been as good a time as today to be blind; technology is making immense progress. Computer technology, for example, has opened up totally new possibilities to acquire information independently. With the aids available 25 years ago, I would never have been able to work in such an interesting and rewarding profession as the one I am in today”.

“To be faced with an untreatable disease is difficult to cope with and each of us deals with it in different ways. For me it was the reason I decided to join the RP organization of my country and to take an active part in the fight for sight.”

As President of Retina International, Christina works with the CEO and the Management Committee to facilitate communication between members, researchers, industry and government, and to represent the member organisations at meetings world-wide.

Looking to the future, Christina adds, “Despite the fact that there is still no treatment available, I can see the difference between now and then: Today there is well-founded hope that this situation will change sooner or later. Through my work in the organization I have had the opportunity of getting to know many wonderful people – patients and researchers – who I would never have met otherwise”.

“Should this be the deeper sense of my having RP? If so, what better reward could I get than friendship?”

Christina Fasser President
Christina Fasser, President

Avril Daly
CEO

Avril Daly joined Retina International as CEO in January 2016. From 2009 she held the position of CEO at Fighting Blindness Ireland.

Avril has been a patient advocate for 17 years with a particlar focus on working towards improved funding and infrastructues for research into rare conditions, clinical trial development for small populations and access to medicines for unmet need. She has been Vice President of EURORDIS (Rare Disease Europe) since 2012 and chairperson of the Genetic and Rare Disorders Organisation (Rare Disease Ireland) since 2009.

In 2011, Avril was appointed by the Irish Minister for Health to a steering committee that developed the Irish National Plan for Rare Diseases. Published in 2014, it represents the patient voice on the working group of the Clinical Programme for Rare Diseases at the Irish Health Service Executive (HSE). Avril was previously co-chair of the National Vision Coalition in Ireland and chair of the Vision Impaired Service Providers Alliance (VISPA). She was a founding board member of the Medical Research Charities Group (MRCG) and, the Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI).

Avril was diagnosed with Retinitis Pigmentosa in 1998.  On the reality of a diagnosis with RP she said “I had just finished college and started my professional carreer when I was diagnosed with RP. I was fortunate that my employers continued to support me and I was able to continue to work and grow in a great communications company with colleagues who remain very close friends today. I know that this is not always the case. Like so many people diagnosed with RP where there is no family history of the condition, you can be almost releived by a diagnosis. At least you know what you are dealing with and you understand that, in fact, it is unusual to have ‘night blindness’ and you are not just the “Clumsy Girl”.

The thing Avril misses most is the ability to drive “My brother and I have always shared an appreciation of cars and I married into a family of car lovers. I still own one myself – perhaps one day I will get to drive it again!”

She says it is the people she encounters that motivate her to continue to work for those affected by blindness and rare diseases, “I had always wanted to work as an advocate and when I quit my job to go work in Public Affairs at Fighting Blindness in Ireland, I admit I just hoped that it would give me some good experience in health advocacy. I could never have known then that I would meet the most dynamic, logical and dedicated people who embodied the meaning of the word ‘visionary’. They showed me that it is possible to make positive change by encouraging stakeholder engagement and working with like-minded individuals to realise common goals.  I was encouraged to get involved with international organisations and I learned the experience of people with rare and common retinal diseases in other countries. It was so clear that regardless of where a person lived, the challenges remained the same. The retina community motivates me every day to do all I can to work with them towards a better future for all those living with degenerating vision no matter where they live and what thier circumstances, for the doctors who want to deliver better care to thier patients and the researchers and innovators who work tirelessly every day to bring about a bright future for this community”.

Avril Daly, CEO

Dr. Orla Galvin

Director of Research Policy

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, 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 tool kit 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 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.

Meet our Management Committee

The Management Committee are elected from the delegates at the General Assembly and work with the President and the CEO on the development and implementation of the Retina International strategic development plan.

The MC also promotes the creation of societies run by individuals with retinal dystrophies for individuals with retinal dystrophies in countries where none exist. They also represent member societies collectively to supra-national bodies and work on the policy and issues determined by the GA.

Management Committee Members are:

  • President: Christina Fasser (Switzerland)
  • Vice President: Claudette Medefindt (South Africa)
  • Treasurer: Abdullah Yussuf (Pakistan)
  • Caisa Ramshage (Sweden)
  • K.P. Tsang (Hong Kong)
  • Micheal Laengsfeld (Germany)
  • Kristinn Halldor (Iceland)

Scientific & Medical Advisory Board (SMAB)

The SMAB is composed of scientists nominated from each member organisations’ scientific & medical advisory boards.

Its purpose is to

  • help national research efforts to produce the best possible results through the exchange of information and co-operation
  • inform and advise Retina International and national Retina International member societies in medical and research matters

SMAB Members

Prof. Eberhart Zrenner
University Eye Hospital, Tübingen

Prof. Dr. Joe G. Hollyfield
The Cleveland Clinic Foundation, Cleveland, USA

Prof. Gerald J. Chader
Doheny Eye Institute, Los Angeles, CA, USA

Australia
Prof. MD Erica Fletcher
University of Melbourne

Dr. Michael Kalloniatis
University of New South Wales, Sydney

Belgium
Prof. Bart Leroy

Ghent University & Ghent University Hospital

Brazil
Dr. Juliana Maria Sallum
Sao Paulo

Dr. Rosane Resende
Rio de Janeiro

Canada
MD, FRCSC Ophthalmologist  Elise Heon
The Hospital for Sick Children, Toronto

Dr. Michael Cayouette
Intitut de recherches cliniques de Montreal

MD PhD Robert S. Molday
University of British Columbia, Vancouver

China
Xia Xiaoping
Zhongshan University, Guangzhou

Finland
Dr. Eeva-Marja Sankila
Helsinki University Eye Hospital, Helsinki

Prof. Hannu Uusitalo
Tampere University

France
Prof. Helene Dolfus
Hôpital de Hauttepierre

Prof. Dr. Isabelle Audo
Hôpital Quinzevingt

Germany
Prof. Dr. Eberhart Zrenner
Universitätsaugenklinik Tübingen

Birgit Lorenz
Uniklinikum Giessen und Marburg GmbH

Greece
Ass. Prof. Miltiadis K. Tsilibaris
University of Crete

Dr. Palimeris Gerasimos
University of Athens

Hong Kong
MD Stephen T.S. Lam
Clinical Genetics Service, Dept. of Health, Kowloon

Prof. She-ping Yip
The Hong Kong Polytechnic University, Kowloon

Iceland
Prof. Einar Stefansson

University of Iceland, Reykjavik

Prof. Kristinn P. Magnusson
University of Iceland, Reykjavik

India
Dr. S. Natarajan
Aditya Jyot Eye Hospital, Mumbai

Ireland
Prof. Peter Humphries

Trinity College, Dublin

Mr. David Keegan
Mater Misericordiae Hospital, Dublin

Italy
Prof. Francesca Simonelli
Universitâ Federico II, Napoli

Prof. Sandro Banfi
Telethon Institute of Genetics and Medicine, Napoli

Japan
MD,PhD Shuichi Yamamoto
Chiba University School of medecine, Chiba

Dr. Akira Murakami
Jyuntendo University School of Medecine, Tokyo

Netherlands
Dr. Caroline Klaver
Afd. Oogheelkunde, Erasmus MC, Rotterdam

Dr. Arthur A.B. Bergen
The Netherlands Ophthalmic Research Institute, Amsterdam

New Zealand
Rachel Barnes
University of Auckland

Assoc. Prof Andrea Vincent
Auckland

Norway
MD, PhD. Cecilie Bredrup
Haukeland University Hospital, Bergen

Ragnheidur Bragadóttir
Ulleval University Hospital, Oslo

Josephine Prener Holtan
Ulleval University Hospital, Oslo

Pakistan
Prof. Dr. M Shakaib Anwar
Islamabad, Pakistan

South Africa
Dr. Susan Williams
University of the Witwatersrand

Prof. Raj Ramesar
UCT Medical School, Cape Town

Spain
Prof. Nicolas Cuenca Navarro
Universidad de Alicante

Dr. Isabel Pinilla Lozano
Institudo Aragones de Ciencias de la Salud

MD. PhD.  Carmen Ayuso
University Hospital Fundación Jiménez Díaz

Sweden
Prof. Sten Andréasson
University of Lund

Prof. Fredrik Ghosh
University of Lund

Switzerland
Prof. Christina Grimm
University of Zürich

Prof. Francis Munier
Clinique ophthalmique universitaire, Lausanne

United Kingdom
Prof. Susie Downes
University of Oxford

Prof. Carmel Toomes
University of Leeds

Prof. MD Michael Cheetham
University College London

USA
Prof. Dr. Joe G. Hollyfield
The Cleveland Clinic Foundation, Cleveland, USA

Prof. Gerald J. Chader
Doheny Eye Institute, Los Angeles, CA, USA

Dr. Brian Mansfield
The Foundation Fighting Blindness, Owings Mills

MD. PhD. Eric Pierce
Harvard Medical School

Newsletter

To keep up to date with our news and activities,
please leave your details below