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 is available in multiple different languages.

You can also find out more by watching this video and by reading this flyer: 

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

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

They are currently in the process of being translated into other European languages. 

 

How can I stay updated on activities of the ERN?

You can stay updated on ERN CRANIO activities by regularly checking our website. You can also follow us on Twitter and LinkedIn

 

How do I become a patient representative for ERN CRANIO?

If you are interested in being a patient representative for ERN CRANIO you can express your interest to Olivia Spivack (Project manager: o.spivack@erasmusmc.nl). She can then explore this further with you. If you want to find out more about patient involvement you can also email Olivia.

 

How can my clinical care be supported by ERN CRANIO?

If you are a patient or a family member of patient with a rare and/or complex craniofacial anomaly or ENT disorder, ERN CRANIO 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 ERN CRANIO, we encourage you to speak to your local healthcare provider. You can let them know about ERN CRANIO, 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