EURORDIS Wins Call for Tender to Develop ERN Manual & Toolbox
The Partnership for Assessment of Clinical Excellence in European Reference Network (PACE-ERN) Consortium, with EURORDIS as its lead, has won an EU Commission call for tender to develop a European Reference Network (ERN) manual and toolbox.
The PACE-ERN Consortium will develop a technical proposal for the manual and toolbox in the coming months. The manual will include operational criteria to be used in the assessment of all applications from networks of healthcare providers and centres of expertise wanting to become ERNs. The toolbox will provide guidelines for network applicants and independent assessment bodies to facilitate the application process.
Background information: Read our recent eNews article What is a European Reference Network? or the EU Commission ERN webpage.
ERNs create a clear governance structure for knowledge sharing and care coordination across the EU. They are networks of healthcare providers that are organised across borders. Due to the low prevalence and complexity of rare diseases, the nature of small and scattered patient populations, as well as the scarcity of expertise, the system of ERNs can bring real added value to rare disease patients; ERNs aim to provide healthcare professionals with access to expertise that they may not be able to access in their country.
EURORDIS, the voice of people affected by rare diseases throughout Europe and a member of the EU Commission Expert Groups on Rare Diseases and Rare Cancers, leads the PACE-ERN Consortium. Other members are HOPE (the European Hospital and Healthcare Foundation) and Accreditation Europe ASBL, the European affiliate of Accreditation Canada International.
Within the context of this tender, the objective of the Consortium is to develop a manual and toolbox that is based on the legal requirements a network must meet in order to become an ERN (as set out in the 2014 EU Commission delegated and implemented decisions, which stem from the 2011 EU Directive on Patients' Rights in Cross-Border Healthcare). By meeting this objective, any assessment of a network's application to become an ERN will be made based on the best possible outcome for patients and clinicians.
The manual and toolbox will provide ERN applicants and the independent assessment bodies with clear and robust guidance to ensure an effective process, and will become the cornerstone of the emerging ERN landscape, building a strong foundation for the successful growth of ERNs.
Eva Bearryman, Junior Communications Manager, EURORDIS
A social network of Rare Disease Communities led by NORD and EURORDIS in partnership with leading disease-specific patient groups. List of Rare Disease Communities:
- Alkaptonuria (AKU)
- Alström Syndrome
- Alternating Hemiplegia
- Atypical Hemolytic Uremic Syndrome
- Amyloidosis
- Apert Syndrome
- Behçet's Syndrome
- CAPS
- Castleman Disease
- CDG
- Choroideremia
- CMTC
- Coats disease
- Cobb Syndrome
- Cryoglobulinemia
- Cystinosis
- Dravet Syndrome
- DysNet, Dysmelia - Limb Differences
- Ectodermal Dysplasia
- Ehlers-Danlos Syndrome
- Epidermolysis Bullosa
- Erdheim-Chester Disease
- Evans Syndrome
- Familiar Aortic Dissection
- Familial Mediterranean Fever
- Fibromuscular dysplasia
- Glut1 DS
- Hemiconvulsion-hemiplegia-epilepsy syndrome
- Hereditary Leiomyomatosis and Renal Cell Cancer
- Hereditary Spastic Paraplegia
- Idiopathic Pulmonary Fibrosis
- Kallmann Syndrome
- Leigh Syndrome
- Lipoprotein Lipase Deficiency
- Lowe Syndrome
- Malignant Infantile Osteopetrosis (MIOP)
- Mastocytosis
- Multiple Myeloma
- Multiple system atrophy
- Moebius Syndrome
- Moyamoya disease
- Multiple Endocrine Neoplasia (MEN)
- Myasthenia Gravis
- Narcolepsy
- NBIA
- Neuroacanthocytosis
- Paraneoplastic Neurological Syndromes
- Pemphigus and Pemphigoid
- Pitt Hopkins Syndrome
- Porphyria
- Primary Orthostatic Tremor (POT)
- Propionic Acidemia
- Pseudomyxoma Peritonei
- Pulmonary Hypertension
- Rett Syndrome
- Sanfilippo Syndrome (MPS III)
- Stargardt Disease
- TRAPS
- Trichorhinophalangeal syndrome
- Trimethylaminuria
- Undiagnosed brain disease
- Von Hippel-Lindau
- Waldenstrom macroglobulinemia
- Whim syndrome
- Alkaptonuria (AKU)
- Alström Syndrome
- Alternating Hemiplegia
- Atypical Hemolytic Uremic Syndrome
- Amyloidosis
- Apert Syndrome
- Behçet's Syndrome
- CAPS
- Castleman Disease
- CDG
- Choroideremia
- CMTC
- Coats disease
- Cobb Syndrome
- Cryoglobulinemia
- Cystinosis
- Dravet Syndrome
- DysNet, Dysmelia - Limb Differences
- Ectodermal Dysplasia
- Ehlers-Danlos Syndrome
- Epidermolysis Bullosa
- Erdheim-Chester Disease
- Evans Syndrome
- Familiar Aortic Dissection
- Familial Mediterranean Fever
- Fibromuscular dysplasia
- Glut1 DS
- Hemiconvulsion-hemiplegia-epilepsy syndrome
- Hereditary Leiomyomatosis and Renal Cell Cancer
- Hereditary Spastic Paraplegia
- Idiopathic Pulmonary Fibrosis
- Kallmann Syndrome
- Leigh Syndrome
- Lipoprotein Lipase Deficiency
- Lowe Syndrome
- Malignant Infantile Osteopetrosis (MIOP)
- Mastocytosis
- Moebius Syndrome
- Moyamoya disease
- Multiple Myeloma
- Multiple Endocrine Neoplasia (MEN)
- Multiple system atrophy
- Myasthenia Gravis
- Narcolepsy
- NBIA
- Neuroacanthocytosis
- Paraneoplastic Neurological Syndromes
- Pemphigus and Pemphigoid
- Pitt Hopkins Syndrome
- Porphyria
- Primary Orthostatic Tremor (POT)
- Propionic Acidemia
- Pulmonary Hypertension
- Pseudomyxoma Peritonei
- Rett Syndrome
- Sanfilippo Syndrome (MPS III)
- Stargardt Disease
- TRAPS
- Trichorhinophalangeal syndrome
- Trimethylaminuria
- Undiagnosed brain disease
- Von Hippel-Lindau
- Waldenstrom macroglobulinemia
- Whim syndrome
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