Usual Rare Eye Diseases

consultations

Planc blanc. Only emergencies and consultations that cannot be postponed (pregnancies, tumours,…) are maintained. 

If closed, teleconsultations

access

Yes, if the clinic can be done by phone (genetic results , genetic counseling, psychological support,…) 

Contact :

By phone :

• +33 (0) 3.88.11.67.53 

By e-mail:

• rdv.cargo@chru-strasbourg.fr

Intra-vitreal therapies

(i.e.anti VEGF)

These are done by the ophthalmology department of the Hôpitaux Universitaires de Strasbourg with a minimal protocol.

Contact : Dr David Gaucher, +33 3 69 55 02 70

Eye emergencies link for

RED complications

Yes emergencies are done by the ophthalmology department of the Hôpitaux Universitaires de Strasbourg with a minimal protocol

Contact : Urgences ophtalmologiques, + 33 3 69 55 04 35

Genetic testing for RED:

maintained/discontinued

Yes, only urgent cases are done (pregnancies mainly), the national sequencing platforms are closed.

specific COVID guidelines from

your GOVERNMENT/TOWN/ REGION

for poorly sighted patients

(or disabled persons or persons with rare diseases)

Information from Ministery of Health:

Site du Ministère de la Santé

Information for people with disabilities:

Espace handicap COVID-19

specific COVID guidelines from the

PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients

(or disabled persons or persons with rare diseases)

French Federation of blind people:

Fédération des Aveugles de France

specific COVID guidelines from LEARNED NATIONAL/REGIONAL SOCIETIES

for ophthalmic diseases care, poorly sighted patients

(or disabled persons or persons with rare diseases)

and rare eye diseases

Link to the French society of ophthalmology

Clinical trials for RED:

• inclusions ongoing/postponed

• follow up visits: done on time/ delayed

• Are patients under trial with COVID identified as having an adverse effect Yes/No

• Industry cope? Yes/No

All novel inclusions are stopped and postponed.

Follow up visits are delayed unless important medical followup is warranted or incase of adverse event .

We works closely with industry . We have national recommendation for clinical studies

ANSM website

Usual Rare Eye Diseases

consultations

Yes.

If closed, teleconsultations

access

 Yes if needed.

Eye emergencies link for

RED complications

Specific email.

Genetic testing for RED:

maintained/discontinued

specific COVID guidelines from

your GOVERNMENT/TOWN/ REGION

for poorly sighted patients

(or disabled persons or persons with rare diseases)

No.

specific COVID guidelines from the

PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients

(or disabled persons or persons with rare diseases)

See SENSGENE website and the websites of associations : Ouvrir les yeux and  Association du syndrome de Wolfram have collected data/guidelines for their pathologies

Link to the national reference network for rare eye diseases SENSGENE in France

specific COVID guidelines from LEARNED NATIONAL/REGIONAL SOCIETIES

for ophthalmic diseases care, poorly sighted patients

(or disabled persons or persons with rare diseases)

and rare eye diseases

Link to the French society of ophthalmology

Intra-vitreal therapies

(i.e.anti VEGF)

Less patients for distancing.

Clinical trials for RED:

• inclusions ongoing/postponed

• follow up visits: done on time/ delayed

• Are patients under trial with COVID identified as having an adverse effect Yes/No

• Industry cope? Yes/No

• Postponed however reopening
• Follow up done
• No patient under trial with COVID
• Industry send COVID guidelines

Usual Rare Eye Diseases

consultations

Yes.

If closed, teleconsultations

access

 Yes if needed.

Eye emergencies link for

RED complications

+ 33 1 58 41 22 01

specific COVID guidelines from

your GOVERNMENT/TOWN/ REGION

for poorly sighted patients

(or disabled persons or persons with rare diseases)

No.

specific COVID guidelines from the

PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients

(or disabled persons or persons with rare diseases)

See SENSGENE website and the websites of associations : Ouvrir les yeux and  Association du syndrome de Wolfram have collected data/guidelines for their pathologies

Link to the national reference network for rare eye diseases SENSGENE in France

specific COVID guidelines from LEARNED NATIONAL/REGIONAL SOCIETIES

for ophthalmic diseases care, poorly sighted patients

(or disabled persons or persons with rare diseases)

and rare eye diseases

Link to the French society of ophthalmology

Usual Rare Eye Diseases

consultations

Yes.

If closed, teleconsultations

access

 Yes if needed.

Eye emergencies link for

RED complications

+ 33 1 42 16 32 01

specific COVID guidelines from

your GOVERNMENT/TOWN/ REGION

for poorly sighted patients

(or disabled persons or persons with rare diseases)

No.

specific COVID guidelines from the

PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients

(or disabled persons or persons with rare diseases)

See SENSGENE website and the websites of associations : Ouvrir les yeux and  Association du syndrome de Wolfram have collected data/guidelines for their pathologies

Link to the national reference network for rare eye diseases SENSGENE in France

specific COVID guidelines from LEARNED NATIONAL/REGIONAL SOCIETIES

for ophthalmic diseases care, poorly sighted patients

(or disabled persons or persons with rare diseases)

and rare eye diseases

Link to the French society of ophthalmology

Usual Rare Eye Diseases

consultations

It is possible to have consultation.

If closed, teleconsultations

access

 Yes.

Intra-vitreal therapies

(i.e.anti VEGF)

Not performed at HEGP usually.

Eye emergencies link for

RED complications

christophe.orssaud@aphp.fr

Genetic testing for RED:

maintained/discontinued

We take blood samples for genetic research.

But the analysis could be delayed.

specific COVID guidelines from

your GOVERNMENT/TOWN/ REGION

for poorly sighted patients

(or disabled persons or persons with rare diseases)

No.

specific COVID guidelines from the

PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients

(or disabled persons or persons with rare diseases)

See SENSGENE website and the websites of associations : Ouvrir les yeux and  Association du syndrome de Wolfram have collected data/guidelines for their pathologies

Link to the national reference network for rare eye diseases SENSGENE in France

specific COVID guidelines from LEARNED NATIONAL/REGIONAL SOCIETIES

for ophthalmic diseases care, poorly sighted patients

(or disabled persons or persons with rare diseases)

and rare eye diseases

Link to the French society of ophthalmology

Usual Rare Eye Diseases

consultations

Maintained.

If closed, teleconsultations

access

 Tel: +33 1 40 02 14 30

Email: cic@15-20.fr

Intra-vitreal therapies

(i.e.anti VEGF)

 Tel: +33 1 40 02 14 30

Email: cic@15-20.fr

Eye emergencies link for

RED complications

 Tel: +33 1 40 02 14 30

Email: cic@15-20.fr

Genetic testing for RED:

maintained/discontinued

Email: cic@15-20.fr

specific COVID guidelines from

your GOVERNMENT/TOWN/ REGION

for poorly sighted patients

(or disabled persons or persons with rare diseases)

No.

specific COVID guidelines from the

PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients

(or disabled persons or persons with rare diseases)

See Retina France website:

Link to Retina France

specific COVID guidelines from LEARNED NATIONAL/REGIONAL SOCIETIES

for ophthalmic diseases care, poorly sighted patients

(or disabled persons or persons with rare diseases)

and rare eye diseases

Link to the French society of ophthalmology

Usual Rare Eye Diseases

consultations

Maintained.

If closed, teleconsultations

access

NA

Intra-vitreal therapies

(i.e.anti VEGF)

Maintained but NA for CRNK

Eye emergencies link for

RED complications

+ 33 5 61 77 23 44

keratocone@chu-toulouse.fr

Genetic testing for RED:

maintained/discontinued

No.

specific COVID guidelines from

your GOVERNMENT/TOWN/ REGION

for poorly sighted patients

(or disabled persons or persons with rare diseases)

No.

specific COVID guidelines from the

PATIENT GROUPS/ASSOCIATIONS

for Poorly sighted/Blind patients

(or disabled persons or persons with rare diseases)

See SENSGENE website:

Link to SENSGENE

specific COVID guidelines from LEARNED NATIONAL/REGIONAL SOCIETIES

for ophthalmic diseases care, poorly sighted patients

(or disabled persons or persons with rare diseases)

and rare eye diseases

Link to the French society of ophthalmology

Clinical trials for RED:

• inclusions ongoing/postponed

• follow up visits: done on time/ delayed

• Are patients under trial with COVID identified as having an adverse effect Yes/No

• Industry cope? Yes/No

Clinical trials are ongoing

keratocone@chu-toulouse.fr