GET INVOLVED IN ERN CRANIO
ERN CRANIO is a European network of expert hospitals, clinicians, and patient representatives. We work together to improve care, research, education, and information for rare craniofacial conditions.
As a patient or a parent, you can also get involved with ERN CRANIO and/or seek support with information on your condition.
There are two official ways to collaborate with ERN CRANIO as a patient or patient organisation:
Formal collaboration
Associate Partner
Supporting Partner
Flexible collaboration
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For patient organizations in Europe
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Flexible way to collaborate with us in ERN CRANIO
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Patient organizations wihtout an ePAG representative
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Individual patients or family members
Click here to find out more:
Click here to find out more:
Associate Partner (patient organizations)
Patient organisations can formally join ERN CRANIO by becoming a member of its European Patient Advocacy Group (ePAG).
What is an ePAG?
The European Patient Advocacy Group (ePAG) represents the voice of patients and families within ERN CRANIO. This group plays an active role in the network by ensuring that patient perspectives are included in care, research, education, and policy development. By working closely with healthcare professionals and other partners across the network, ePAG members help shape activities and decisions to better reflect the needs and experiences of patients and their families.
The role of ePAG members
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Represent patient across Europe
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Work together with doctors and researchers
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Help set priorities for care, research and education
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Support communication with the patient community
Criteria to become Associate Partner
To become an associate partner within ERN CRANIO, organizations need to meet specific eligibility criteria.
a patient organization must:
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Be legally registered in Europe
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Be a non-profit organization
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Be led mainly by patients or family members
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Be independent, including financial independence (especially from industry)
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Be active in patient support or advocacy
What Associate partners do:
Associate partners, appoint a representative (ePAG advocate), who:
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Represents patients in different ERN CRANIO working groups
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Works together with clinicians and researchers
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Helps develop ERN CRANIO Projects that improve care, including development of guidelines and patient information
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Supports communication with the wider patient community
Rights of Associate Partners
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Use the ERN CRANIO logo for network-related activities
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Have representation in the ENR CRANIO Board through ePAG
Kindly note that this role is voluntary and does not involve financial remuneration; however, reimbursement of travel expenses may be provided.
Would you like to have more information on how to join as Associate partner, please do not hesitate to contact the ERN Coordiantion team by clicking this button:
Supporting Partner
The supporting partnership offers a more flexible way to collaborate with ERN CRANIO. It is designed for organizations that may not fully meet the requirements for an associate partnership but still wish to be involved in the network’s activities.
This pathway allows a broader range of groups to contribute, share experience, and stay connected to ERN CRANIO. In this way, supporting partnerships help to promote inclusivity and strengthen the overall network.
Supporting Partners can include:
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Patient organizations without an ePAG representative
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Patient organizations outside Europe
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Individual patients or family members
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Social media or online patient support groups
The role of Supporting Partners:
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Take part in specific projects or surveys
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Share feedback and patient experiences
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Help spread information about ERN CRANIO
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Be consulted on certain activities
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Sometimes join meetings or events (by invitation)
Kindly note that supporting partners are not official members of the ePAG group and consequently do not have voting rights
Would you like to have more information on how to join as supporting partner, please do not hesitate to contact the ERN Coordination team by clicking this button:
Do you need help?
Contact ERN CRANIO
If you have questions about a rare craniofacial or ENT condition, you can contact us.
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
Expert review via CPMS (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.
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!
