MetabERN is for patients
Our team strives to achieve excellence in every aspect of our MetabERN network, from supporting diagnostics to education and research.
We have set our short-term plans in work packages (WPs) however we stay flexible with our goals and planning to serve both the metabolic community and patients with IMDs.
We focus on establishing a growing and developing network. We are starting now from 69 HCPs and 18 European Member States, and we aim at accomplishing to reach out and collaborate with all expert centers in Europa.
There is no inherited metabolic disorder (IMD) for MetabERN, which is less important, then another one, even if the disorder is extremely rare.
We will harmonize care and practices, including guidelines in patient care, we will increase interdisciplinary and inter-institutional cross talk, and support all patient initiatives towards harmonizing and improving all aspects in the chain of care.
Expert specialists and their team will take advantage of this exceptional opportunity to improve health care for Orphan disorders.
With the support of the SSIEM we encourage knowledge transfer and support specialized education of professionals and patients are one of the most important part of our mission.
The mission of MetabERN is to generate a patient centered European Reference Network for hereditary metabolic disorders able to identify and bring the best expertise to patients to facilitate prevention, diagnosis, management, research and access to therapy to patients affected by rare inherited metabolic diseases (IMDs).
MetabERN represents the first most comprehensive, pan-metabolic, pan-european, patient-orientated platform ever conceived worldwide, aimed to transform how care is provided to patients with inherited metabolic diseases (IMDs) in Europe.
It aims to:
MetabERN also aims to transfer knowledge in Member States where there is an insufficient number of patients and/or lack of knowledge to ensure highly specialised care to patients affected by IMDs and advance innovation in medical science and health technologies in this area.
MetabERN is entirely patient and expert-led. It is composed of 69 certified Health Care Providers (HCPs) endorsed by the Ministries of Health from 18 different EU countries. Additional Members, bearing the endorsement of the proper national agency and fulfilling the EC requirements, will be admitted after the approval of the network by the EC.
At its functional level, the MetabERN is composed of 7 Sub-networks, each covering a different group of rare inherited metabolic diseases (IMDs). As known, in fact, IMDs are a group of more than 700 genetic and often lethal disorders affecting children and adults. All IMDs, with no exclusion, are of interest for the MetabERN, independently from their prevalence, frequency and existing previous interest for research or therapy development. Therefore, considering the complexity of the IMDs field as a whole the metabolic disorders have been divided in the following 7 disorder groups that are the basis of the MetabERN subnetworks.
Each member of MetabERN holds a role in one or several of the identified governance bodies, including the MetabERN Board (all members) as well as at least one of the disease specific sub-groups and at least one of the thematic committees spanning all disease-specific sub-groups, in which professionals and patient/family associations will collaborate within the specific disease group/disease but also to transversal programs common to all subnetworks.
A Statute representing the Governing document of MetabERN has been produced andit is available upon request.
The Statute defines the rules under which the MetabERN is governed and functioning.
MetabERN represents the most comprehensive, inclusive and patient-orientated platform that will transform how care is provided to patients with metabolic diseases in Europe. 69 EU Hospitals from 18 countries joined synergies to set up MetabERN which will facilitate access to quality, affordable, cost-effective care across EU.
MetabERN involves a formidable concentration of competences combining different skills and expertise.
Besides main members major commitment, collaborating partners contribute to the development of the projects and activities adding their own specific capacities in terms of knowledge management and implementation of the network related activities.
BRAINS FOR BRAIN FOUNDATION ONLUS
http://www.brains4brain.eu/
Society for the Study of Inborn Errors of Metabolism
http://www.ssiem.org/home/welcome.asp
European Research Network for evaluation and improvement of screening, Diagnosis and treatment of Inherited disorders of Metabolism
http://www.erndim.org/home/start.asp
ITALIAN NATIONAL INSTITUTE OF HEALTH
National Centre for Rare Diseases