From patients...

Where can I find out more about ERNs?

You can find out more about ERNs on the European Commission Website: https://ec.europa.eu/health/ern_en

This website available in multiple different languages.

 

How can I stay updated on activities of the ERN?

You can stay updated on ERNICA activities by regularly checking the ERNICA website. Here news and events will be posted.

 

How do I become a patient representative for ERNICA?

If you are interested in being a patient representative for ERNICA you can express your interest to Renée de Ruiter (Project manager): r.deruiter.1@erasmusmc.nl 

She can then explore this further with you. If you want to find out more about patient involvement you can also email Renée.

 

How can my clinical care be supported by ERNICA?

If you are a patient or a family member of a patient with a rare inherited and congenital digestive disorder or gastro-intestinal disorder, ERNICA may be able to help you. Patients cannot refer themselves directly to receive the support of an ERN. However, with a patient's consent and in accordance with the rules of their national health system, a patient’s information can be referred to the relevant ERN member in their country by their local healthcare provider. Their local health care provider can then access expert advice from the network, if this is needed.

If you are interested in accessing support from ERNICA, we encourage you to speak to your local healthcare provider. You can let them know about ERNICA, a multidisciplinary network of highly specialised healthcare professionals from across Europe who may be able to provide expert advice specific to your rare disease or condition.

Here is a downloadable flyer and video link that you can give to your healthcare provider for more information

Flyer: https://ec.europa.eu/health/sites/health/files/ern/docs/2018_patientsflyer_en.pdf

Video: https://ec.europa.eu/health/sites/health/files/ern/videos/2018_patientsvideo_en.mp4