RI Newsletter Spring/Summer 2019

Update from your RI Team


It is hard to believe that it has been over a year since our conference RIWC2018 and General Assembly was held in Auckland, New Zealand. The RI Management Committee (MC) and our President Christina Fasser have been supporting our CEO Avril Daly and the team at the Dublin office in delivering the objectives agreed at RIWC2018.

The RI MC will meet again at the end of June 2019 in Dublin, Ireland. There, they will discuss and develop the RI strategy for 2020 – 2025. Also, the RI MC will be preparing for the registration of Retina International in Ireland along with required changes to the governance as discussed at the GA, we will be updating you our members on progress over the coming months.

The next Retina International World Congress will be held in Iceland in spring 2020 – RIWC2020. Preparatory work for the meeting is ongoing by the local group, Retina Iceland. Details and information about the meeting will be available soon.

We would like to take this opportunity to thank Frazer Alexander for his many years of support and valuable service to Retina International, including the wonderful RIWC2018 in New Zealand last February. Fraser has recently resigned from his position as Deputy President on the RI MC and Claudette Medefindt has taken up the role. We are delighted that Fraser continues working with RI as a volunteer.


Expansion of RI Educational Toolkits


We have been adding to our repertoire of Educational Toolkits in recent months. On February 6th, on behalf of RETINA ACTION – A Global Initiative for a Lifetime of Vision, we launched educational Toolkit on Diabetic Eye Disease www.retina-DED.org. RETINA ACTION is a global initiative of non-government agencies, charities and foundations who are concerned with issues relating to vision loss in our ageing population. RETINA ACTION acts as a Special Interest Group (SIG) that is facilitated by Retina International, with input from eight other groups involved. The educational toolkit on diabetic eye disease www.retina-DED.org is produced by Retina International and was designed as an online educational toolkit providing in-depth information on this complex condition to patients, care-givers, health professionals, researchers and policy makers.

Following on from the launch of Phase I of the Inherited Retinal Disease (IRD) Toolkit in late 2018, we launched IRD Phase II on Rare Disease Day February 28th 2019. Phase II brings information focusing on two new disease areas: Stargardt disease and choroideremia. Phase III is focusing on RP and will launch over the summer. Word has been getting out about our IRD Toolkits, with articles such as http://www.vision-research.eu/index.php?id=1209.

One of our aims for the Educational Toolkits is for the content to be used and shared freely by our member organisations. Therefore, we were delighted to learn that our website and Educational Toolkits are being successful used by our member organisations to develop and support their own websites. Retina Bulgaria, for example, recently established a website based on layout and content from Retina International’s website https://retinabulgaria.bg/. Our Toolkits have been of benefit to other members as we hear:

“Retina Suisse and Pro Retina Germany will translate some parts of the AMD and IRD toolkits provided by Retina International into German. The toolkits will be used by Retina Suisse as a template and inspiration to produce further information material.”


RI Webinar Series


Connectivity and communication are central to moving forward towards our shared goals of accessing life-changing treatments. Retina International are facilitating vital communication between our members with our new Webinar Series where we speak with experts about hot topics. For our first webinar, we spoke about the objectives and challenges of developing a patient-led organisation and building a rare disease community, with Dr Petia Stratieva of Retina Bulgaria. It was streamed live on March 12th 2019. Future webinars will focus on topics such as the HTA process, access to medicines, CRISPR and other new technologies and we will publicise access. One of our aims with our Webinar Series is to build a library of webinars that can be accessed and used by our members as a source of information on important topics. https://retina-international.org/ris-webinar-series-1-objectives-challenges-of-a-patient-led-organisation/




RI is facilitating two Special Interest Groups dedicated to Usher syndrome (RI-USH) and Choroideremia (RI-CHM). RI-CHM is headed by Michael Längsfeld of PRO RETINA Germany and is forming a volunteer-based committee https://retina-international.org/what-we-do/ri-chm/. The coordinator of RI-USH, Mrs. Dominique Sturz, Patient Advocate Usher Syndrome & Rare Eye Diseases from Austria is joined by Dario Sorgato from Italy, founder of NoisyVision and #YellowTheWorld, Melissa Chaikof, the President of Usher 1F Collaborative in the US, and Carol Brill, Trustee and Director of Scientific Research for CUREUsher. You can read more about the new RI-USH team as it grows and develops here https://retina-international.org/what-we-do/ri-ush/meet-our-ri-ush-team/


EURORDIS Black Pearl Awards


Retinal disease advocates were in the spotlight this year at the EURORDIS Black Pearl Awards in Brussels. The awards specifically recognise the achievements and work of individuals who are changing the lives of people within the rare disease community. This year, two people from our rare eye disease communities were acknowledged for their exceptional work. Russell Wheeler received one of the ‘EURORDIS Volunteer Awards’ in recognition of his extensive work as a patient advocate. ‘Lifetime Achievement Award‘ went to Michael Griffith for his work over the years in not just the rare eye disease space but in many other rare disease areas as well as patient advocacy across diseases. Congratulations to both Russell and Michael and best wishes for their continued work! You can read more about the awards here https://retina-international.org/1441-2/ and here https://blackpearl.eurordis.org/


GDPR and Health Research in Europe


As our European member organisations will be well aware, GDPR compliance was mentioned a lot over the last year. GDPR refers to the General Data Protection Regulation (EU) 2016/679 (“GDPR”). This is a regulation in EU law on data protection and privacy for all individuals within the EU and EEA that aims to give control of personal data to the individual and to unify data regulation within the EU. It also applies to health or medical data, research involving human samples and clinical trials. This has led to some concern in the research communities on how GDPR might affect research. In early 2019, the Medical Research Charities Group (MRCG) published a useful report ‘GDPR AND HEALTH RESEARCH’, based on a stakeholder meeting that representatives from Retina International and Fighting Blindness participated in. You can read the full report here https://docs.wixstatic.com/ugd/75eae6_3b6233b3f8ac40a8804aa9e0aaf4782a.pdf


Rare Disease Day Policy Event at the United Nations:


On February 21st 2019, the Rare Disease Day Policy Event was held at the United Nations in New York. It was the second High Level Event of the NGO Committee for Rare Diseases. It formed part of the broad strategy of the NGO Committee that will contribute to better lives for the community of people living with a rare disease across the globe. It will achieve this by working towards the achievement of Agenda 2030 and the relevant Sustainable Development Goals. The Rare Disease Day Policy Event also launched a call for the UN to adopt a resolution at the General Assembly that will formally make rare diseases a global priority. This will set a wave of policy actions in motion that will ultimately improve the lives of persons affected by rare diseases around the world. Avril Daly, CEO of Retina International, spoke at the UN Policy Event about ‘Raising awareness in society at the global level’ in a vibrant session that showed ‘the need for and the benefits arising from policies related to diagnostic, cross-border and cross-sector collaboration, and use of emerging technologies’.

You can watch the speaker sessions and access the programme and presentations on the NGO Committee for Rare Diseases website here https://www.ngocommitteerarediseases.org/rare-disease-day-policy-event-at-the-united-nations/


ERN-EYE 3rd Annual Meeting


ERN-EYE organized its 3rd General Annual Meeting from March 21st to 22nd in Prague, Czech Republic. The meeting was an “opportunity to discuss the issue of being a member of the ERN-EYE network and the responsibilities, benefits and added value”. You can read more about this great meeting here https://retina-international.org/ern-eye-hold-3rd-annual-meeting-in-prague-march-2019/




The ARVO annual conference descended onto the beautiful downtown of Vancouver at the end of April and beginning of May. This was an exciting conference where many advances were announced side-by-side with crucial new insights from basic research. Our American member Foundation Fighting Blindness has a very useful collection of reports and articles highlighting outstanding work from the conference. You can read the ARVO-specific articles here by searching for ARVO 2019 https://www.fightingblindness.org/research/

A highlight of the conference was the first patient-specific session entitled ‘Changing What It Means To Be Blind’. This was a session where patients and parents gave an insight into living with rare retinal diseases and how they have succeeded in their various walks in life. The session was chaired by Kirsten Smedley of ‘Curing Retinal Blindness Foundation’. Our CEO Avril Daly spoke about the challenges faced by the rare retinal disease communities around the world. It was a welcome advance to have a session at an international scientific and medical conference that was dedicated to patients.

RI held the traditional and very popular lunch meeting with the RI Scientific and Medical Advisory Board on Monday April 29th. A selection of speakers gave short, sharp updates of their newest work, sparking collegial discussions around the room. The resulting report from this is being prepared by Jerry Chader and as always will be circulated to our members. The report will focus on recent highlights from our clinical and research members of the SMAB.


IRD COUNTS – Understanding the impact of IRDs


The IRD COUNTS pilot impact study is a joint effort from several different stakeholders, including our members Retina UK and Fighting Blindness Ireland. The aim of the study is to assess what is known about the prevalence of 10 Inherited Retinal Dystrophies in the UK and Ireland. It also assesses the financial burden and psycho-social impact of these conditions to the individuals affected, their families and carers. IRD COUNTS encompasses a literature review of published data and analysis of real-world data from families affected in both the UK and ROI. Data from this study is due for release Autumn 2019. The study is being facilitated by RI with Dr Orla Galvin, RI’s Director of Stakeholder Engagement, at the helm. If you would like to contact us about the study, please email orla.galvin@retina-international.org.


Of interest…


As a look back over the last few months, we have selected a few research-related items that are of interest:


NIH Director’s Blog – Moving Closer to a Stem Cell-Based Treatment for AMD


American Society of Gene and Cell Therapy launch patient-focused resources


Not too dim, not too slow, just right: The Goldilocks of vision restoration.


Adopt a moratorium on heritable genome editing




Sharing is Caring…

If you would like to share this Newsletter with your organisation, you can share this link or the pdf below:

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RI Member & Researchers News

Our members and researchers have been updating us on their recent efforts and we are very proud to highlight their work. You can read about here https://retina-international.org/wp-admin/post.php?post=1745&action=edit


Or by downloading this pdf:

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