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18th May 2020

Dear ERN-EYE members and followers,

First of all, we hope that the COVID-19 pandemic has spared you and your relatives and collaborators.

Many countries are experiencing the end of the lockdown and this has a high impact on our everyday lives and most importantly on the care provided to patients with Rare Eye Diseases.

Indeed the COVID-19 general circulation seems to decrease enough to enable resetting our clinical activities, anyhow for some of us, we are therefore updating our ERN-EYE COVID-19 website.

Our practices have changed and will change even more in the next months. Improved sanitary procedures and protocols are developed worldwide to ensure security for the patients and the professionals thus we are adding a technical page on this matter.

It is too early to evaluate the consequences of the COVID-19 crisis impacting care and research of RED patients . The story is far from being finished … but certainly will leave us stronger by the end of this bewildering time.

We wish you a smooth end of the lockdown (if it is the case), a very good resetting of activities and to stay in good health,

Pr Hélène Dollfus, ERN-EYE coordinator


3rd April 2020

Dear ERN-EYE members and followers,

In the context of the COVID-19 pandemic times first of all, we hope that you are keeping healthy as well as your relatives. These times are tragic and very disturbing by many means for all of us. 

Across Europe there are many sudden changes we have to face concerning the care for Rare Eye Diseases patients: cancellation of non urgent care, emergencies done on downgraded modes, replacement of clinics with teleconsultations, cessation of genetic testing , downgraded mode for clinical trials, … In addition our patient population with visual impairment or blindness faces difficulties in protecting themselves as well as the various facets of lockdown consequences …

A big deal of information is already circulating via media and national governments and institutions and we will not relay on these. However we think that some useful European links and links specific for RED  information as well as specific recommendations for our patients may be useful to all. Thus a specific COVID-19 & ERN-EYE web page will be regularly updated on the ERN-EYE website: www.ern-eye.com. We count on your contribution to constantly improve it (ern.eye.projet@chru-strasbourg.fr).

Hoping that this general dramatic situation will be soon get better we send our best wishes to all,

Pr Hélène Dollfus, ERN-EYE coordinator


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