Publication of the final report, the activity reports, the information factsheets and the declaration of future cooperation
All the results of the EMRaDi project are available on the EMRaDi website.
News
Publication of 2 information factsheets
An information factsheet for rare disease patients and their relatives and an information factsheet for primary care have been realized by the partners of the EMRaDi project.
More than 7500 GPs have been informed about rare diseases in the EMR
At the beginning of July, the EMRaDi project partners sent information letters to 7520 general practitioners and other resident doctors in the Euregio Meuse-Rhine to help them to identify more easily among their patients cases of rare diseases and support them in their care.
EMRaDi selected for the REGIOSTARS award
The EMRaDi project has been selected as one of the candidates for the REGIOSTARS award. This annual prize is given by the European Commission to honour and reward the most innovative projects financed by the European Union.
EMR Rare Disease Day: documents
On 28 February 2019, the EMRaDi consortium gathered more than 20 speakers and 120 participants on the occasion of Rare Disease Day at the Euregio Meuse-Rhine.
Find all the documents here.
Find all the documents here.
Press release: EMR Rare Disease Day
On 28th February it will be International Rare Disease Day.
On this occasion, the INTERREG project “EMRaDi” will organise the first Euregio Meuse-Rhine Rare Disease Day.
On this occasion, the INTERREG project “EMRaDi” will organise the first Euregio Meuse-Rhine Rare Disease Day.
Call
We need you to help us to identify the difficulties rare disease patients encounter in their daily life and care journeys in our regions.
Press release
On the occasion of its first anniversary, the partners of the EMRaDi project have issued a press release.
World Duchenne Awareness Day
7th September 2017: The project Rare Diseases in Euregio Meuse-Rhine supports World Duchenne Awareness Day
PATIENT SOUNDING BOARD: Call for patient representatives
You are part of a patient organization that represents Huntington disease, Duchenne muscular dystrophy, chronic myeloid leukemia (CML), polycythemia vera (PV), Silver-Russel syndrome, Rett syndrome, galactosemia (type 1) or phenylketonuria?
Selection of the rare diseases
The EMRaDi project focuses on eight rare diseases that are used as “tracers”, two diseases per disease group we focus on in EMRaDi project (syndromal, hematological, neurological, and metabolic rare diseases).