15 apr

EMRaDi looks back at Rare Disease Day

On 28 February, the Interreg-project EMRaDi organised EMR Rare Disease Day to discuss how cross-border cooperation can improve the treatment of rare diseases in the Euregio. Marèl Segers and Kim Karsenberg of project partner VSOP look back at the event.

Some 6 to 8% of the population is afflicted by a rare disease. In the Euregio Maas-Rhine this accounts for some 300.000 persons, often children. Healthcare for rare diseases is usually limited and scattered. This is why patients with rare diseases tend to look across borders to find the right healthcare professional. But at the other side of the border, they often face new obstacles:  different cultures, healthcare systems and insurance schemes.

The Interreg-project EMRaDi wants to remove these barriers. On 28 February, the project organised EMR Rare Disease Day to raise awareness about the need for improved cross-border cooperation. The conference in Maastricht brought together 100 healthcare professionals, patient (representatives), healthcare insurers and policy officers from across the Euregio.

Collaboration is essential, says Marèl Segers, Policy Officer for Rare Diseases at project partner VSOP (Dutch Patient Alliance for Rare and Genetic Diseases): ‘We need the involvement of all stakeholders to better organise the treatment of rare diseases in the Euregio Meuse-Rhine. These are not only healthcare providers, but also insurance companies and patient organisations. It is good that they are all part of the discussion.’

Kim Karsenberg looks back at EMR Rare Disease Day positively: ‘The participants were not just enthusiastic about the content of the event, but also about the opportunity of networking and meeting people with different backgrounds.’ EMR Rare Disease Day delivered recommendations on awareness, undiagnosed diseases and cross-border healthcare and cooperation.

EMRaDi is led by Mutualité chrétienne Verviers-Eupen and receives report from Interreg Euregio Meuse-Rhine, with EUR 1,7 mn coming from the European Fund for Regional Development.

More information: www.emradi.eu