HOW CAN ERN CRANIO SUPPORT ME AS A PATIENT?
SUPPORT FOR PATIENTS & FAMILIES
What can ERN CRANIO do for you?
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Information about your condition
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Possible care or treatment options
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Finding expert centers in Europe
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Connect you with patient/parents organisations throughout Europe for peer support
Referral to Expert Center in the EU
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.
Online consultation of cases (through your doctor)
If your case needs further expert input, your treating doctor can request advice through CPMS (Clinical Patient Management System)
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Used by clinicians only
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Secure European system
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Experts from ERN CRNAIO hospitals review the case
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Patient consent is requered
Patient cannot submit cases directly - your doctor does this
Expert advice returned to your doctor
A multidisciplinary European team provides recommendations to your clinicians. The final treatment decision always stays with your own doctor.
Make your healthcare provider aware of ERN CRANIO
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. You can show the video below to your healthcare provider, and download information flyers about ERNs via the button below. The flyers are available in all European languages.
Connect with other patients, parent organizations throughout Europe
ERN CRANIO works closely with a network of patient organisations from across Europe. Together, we aim to ensure that the voices and experiences of patients and families are represented in the improvement of care, research, education, and support for people living with rare craniofacial and Ear Nose and Throat anomalies.
Connecting with others who share similar experiences can provide valuable support, practical advice, and access to helpful information. If you or a family member have been diagnosed with a rare condition that falls within the scope of ERN CRANIO, ERN CRANIO can support you by exploring whether there is a patient organization or support group in Europe for your specific condition and connect you with them.
Other relevant webpages:
Interested how patient organizations can become involved in ERN CRANIO?
Contact us for help
If you have any questions, please do not hesitate to reach out to us, we are more than happy to help!
