Do you have or know someone with a rare and/or complex craniofacial anomaly or ENT disorder? Are you struggling to get a diagnosis or treatment?
Are you a healthcare professional looking for highly specialised advice?
ERN CRANIO may be able to support you.
Patients cannot refer themselves directly to receive the (clinical) support of ERN CRANIO. With patient consent and in accordance with national health system rules, a patient’s information can be referred to the relevant ERN member/affiliated partner hospital in their country by their local healthcare provider. The relevant ERN member/affiliated partner can access expert knowledge and advice from other member/affiliated partner hospitals within that ERN, if this is needed.
Consultations are carried out through the Clinical Patient Management System (CPMS), a web-based clinical software application allowing healthcare providers from all over the EU to work together virtually to diagnose and treat patients with rare, low prevalence and complex diseases. ERN CRANIO member hospitals and affiliated partners have access to this platform. Centres not involved in ERN CRANIO may be granted guest access to the CPMS if appropriate and on request.
If you are a patient or family member interested in accessing clinical 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 a particular rare disease or condition.
Here is a downloadable flyer and video link that you can give to your healthcare provider for more information. These are available in all European languages and can be accessed via this link under 'Related information': https://ec.europa.eu/health/ern_en