The EMRaDi project – Euregio Meuse-Rhine Rare Diseases – has three main objectives:
In order to realise these objectives, field activities are implemented by the project partners in five Work Packages (WP):
To increase the transparency of needs and availability of services in the field of rare diseases in the EMR
To develop EMR models of RD patient pathways in order to draw up patient-oriented recommendations in synergy with national and European developments
To improve the network of health care providers, health insurance providers and patient organizations and to raise (public) awareness of rare diseases
The Mutualité chrétienne Verviers-Eupen (MCVE), the lead partner of the project, ensures the global coordination and management of the project with the support of the experienced team from its umbrella organization, the Alliance Nationale des Mutualités Chrétiennes (ANMC).
The EMRaDi Steering Committee, which comprises all the partners, meets at least every three months to evaluate the project implementation, share information and coordinate the interconnection of all activities.
Our communication strategy focuses on the needs of our main target groups:
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This Work Package, led by Maastricht University, will focus on:
The needs assessment is based on a quantitative analysis of 50-60 rare diseases; a report will be drawn up on these rare diseases and the situations of patients suffering from them in the EMR (including legal and financial aspects). In addition, a review of the literature on the needs and demands of rare disease patients and their relatives will be conducted. These analyses will take into consideration cross-border care mobility, European Union policies and in particular the national rare disease plans of the three participating countries.
This Work Package aims to evaluate the supply and demand in the field of rare diseases
The core concept of a rare disease patient pathway encompasses all the steps from the first symptoms experienced by the patient, along his or her path through the health system towards (hopefully) a fast, successful diagnosis and including every aspect of the care – whether organizational, medical, social, psychological, legal and/or vocational) – to finally ensure the patient the best possible quality of life.
In order to develop organizational models for the management of rare diseases in border regions and to draw up patient-oriented recommendations, this Work Package, led by the Mutualité Chrétienne and Solidaris-UNMS, will focus on
The project partners will meet patients, relatives and health professionals to gather the information through interviews and focus groups.
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The outcome of this Work Package will be a better evaluation of the needs and of the existing rare disease patient pathways in the Euregio Meuse-Rhine for the eight selected rare diseases.
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This Work Package, led by Maastricht University, aims to identify and develop patient-oriented models of good practice for rare disease patient pathways within and across the different regions of the EMR.
As an outcome, three variations for organizational models of good practice for the management of rare diseases will be available at the end of the project:
This Work Package is led by the University Hospital of Aachen and its Centre for Rare Diseases (UKA/ZSEA).
In five activities, the cooperation between the participating university hospitals will be substantially improved and the exchange of patients optimized. This will be done in close cooperation with the other project partners and stakeholders.
On the basis of an information exchange of information, common practices for diagnosis and care will be drawn up which will lead to better procedures for the exchange of human material, files and – last but not least and most important – patients.
Exchange programmes, information sessions and communication tools will result in:
We are aiming for a substantial decrease in the time to diagnosis for patients with the rare disease(s) selected, as this is one of the major problems perceived in the field. Furthermore, the number of patients crossing the border will increase, as will the number of GPs making referrals to CHU Liège, MUMC+ and UKA/ZSEA as specialised centres for rare diseases.
VSOP (Vereniging Samenwerkende Ouder- en Patiëntenorganisaties voor zeldzame en genetische aandoeningen), the leader of this Work Package, will set up a Patient Sounding Board (PSB) including: Achse (Germany), RaDiOrg (Belgium) and a patient representation from the eight rare diseases selected in the EMRaDi project. Three yearly meetings are planned, in addition to regular contacts and teleconferences. In consultation with the PSB, VSOP will: