Update: 01.09.2020 

Update about COVID-19 and Rare Eye Diseases 

 

Message from Pr Dollfus, ERN-EYE coordinator

 

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Blind and visually impaired people: protective measures at your fingertips!

This video provides useful information about protective measures that require more vigilance so that they are carried out properly by both visually impaired people and their family or caregiver. 

It was made by Dowino creative studio in France. It has been adapted in English by ERN-EYE with the help of one of the ePAG patients.

 

 

Watch the video on YouTube

Flyer to upload

 

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General information

You will find hereafter COVID-19 fight general informations by way of links of various European and International official sites from institutions, bodies and agencies as well as from European Rare Diseases structures or Patient communities.

 

• Information from institutions, bodies and agencies

 

WHO : Coronavirus ( COVID-19 ) advice for public

EUROPEAN COMMISSION : COVID response 

EUROPEAN COMMISSION : ERNs and COVID-19

EUROPEAN COMMISSION : CPMS for COVID-19

EMA : Statement on the Guidance on the Management of Clinical trials  during COVID-19 pandemic

EMA : latest updates about Coronavirus

 

• European Rare Diseases structures and Patient communities

 

ORPHANET : website on COVID-19 and Rare Diseases

EURORDIS : COVID-19 information ressource centre

EURORDIS Statement : the rare disease community alerts over discrimination in critical care

 

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Ophthalmic COVID-19 information 

 

• Learned societies - Professional groups

 

EURETINA : latest COVID-19 Updates

AAO : Important coronavirus updates for ophthalmologists 

SFO : The French Society of Ophthalmology COVID-19 information

Polish Society of Ophthalmologists : COVID-19 recommendations

Royal College of Ophthalmology : COVID-19 clinical guidance for ophthalmologists

Royal College of Ophthalmology : Keeping our eyecare providers and patients safe during the COVID-19 pandemic

German Ophthalmological Society : COVID-19 recommendations

European Retinoblastoma Group : COVID-19 recommendations

 

• Patient associations - Patient groups

 

 

 

Usher Initiative Austria : Guidelines for Usher Syndrome and other related syndromes

 Retina International : News bulletin of July

 Retina International : Use of Chloroquine

Retina International : Advice for people currently receiving Anti-VEGF treatment for Neovascular Age-related Macular Degeneration (nAMD) or Diabetic Macular Edema (DME)

 Eurordis : Rare Barometer survey on rare disease patients’ experience of COVID-19

 Pro Retina Deutschland : COVID-19 recommendations

• ERN-EYE statements

Flash info 01 : Overview of the retinal risks concerning Hydroxychloroquine/Chloroquine therapy during the COVID-19 pandemic  

ERN-EYE experts'editorial : "Hydroxychloroquine hitting the headlines - retinal considerations"

Flash info 02 : What is the chance of SARS-CoV-2 virus transmission with tears or conjunctiva?

Flash info 03 : Recommendations for patients with uveitis during the COVID-19 Pandemic

 

• Patient's questions

FAQ : Patients Frequently Asked Questions

 

• Next events

Next events : List of postponed or cancelled events

 

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COVID-19 situation of the health care providers of ERN-EYE 

Click on the name of the country to see the dedicated page.

 

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