Do you have or are you a family member of a child with a rare inherited and congenital digestive disorder or gastro-intestinal disorder? Are you struggling to get a diagnosis or treatment?
Are you a healthcare professional looking for highly specialised advice?
ERNICA may be able to help you.
Patients cannot refer themselves directly to receive the (clinical) support of an ERN like ERNICA. 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. ERNICA member hospitals and affiliated partners have access to this platform. Centres not involved in ERNICA 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 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 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
ERNICA engages in a wide range of other activities. Visit the network activities page to explore whether they may be of benefit to you.