Norwegian and Czech health experts join forces for rare diseases
Children with rare diseases and their families in Norway and the Czech Republic will receive improved health care services thanks to a successful collaboration between health experts in both countries. The Norwegian Institute of Public Health (NIPH) has contributed to the collaboration as part of the EEA Grants and Norway Grants initiative.
The aim of the initiative is to encourage knowledge-sharing and active working networks across borders with other European countries. Part of the NIPH’s role as a Donor Programme Partner is to provide public health advice and connect health experts.
Frambu Centre for Rare Diseases
The Frambu Centre for Rare Diseases is an excellent example of a Norwegian partner that is providing expertise to other countries. Since 2009, Frambu has had partnerships with Romania, Hungary, Portugal and the Czech Republic.
Dr. David K. Bergsaker and Lisen Julie Mohr reflect on their experiences:
“These partnerships have given the professionals at Frambu a unique opportunity to share knowledge and expertise about living with a rare disease. Inspired by this type of collaboration, Frambu has also reviewed their working practices for the well-being of our patients with rare diseases.
"The EEA Grants and Norway Grants have given us an extraordinary opportunity to learn about each other, to establish friendships and to co-operate. Cross-border co-operation is an important part of Europe's future. Patients who are diagnosed with rare diseases have similar needs, regardless of their citizenship. Frambu is keen to continue our partnership with European countries which benefit from the EEA Grants and Norway Grants.”
Improved child health care in the Czech Republic
“Frambu is one of the international leading experts on the provision of integrated health and social care for children with rare diseases and their families. We value the collaboration with our Norwegian partners immensely since they are adding unique angles to our current expertise in the field, says Prof. MUDr. Milan Macek from the Prague National Coordination Centre for Rare Disease at the University Hospital Motol.
“However, we now need to learn the best practice for medical implementation of next generation sequencing in diagnostics from Haukeland University Hospital and Dr. Gunnar Houge. We also need to learn how to establish the social diagnosis in rare diseases, how to arrange for patient education, build awareness and deal with wider issues in affected families from our partners at Frambu. We are also very much in line with the multidisciplinary approach promoted by our partners, which not only assures “medical success”, but also involves patient associations as our equal partners. In this regard, we are delighted that the Czech Rare Disease association (CAVO) has joined forces with us and has started to gather valuable experience on site at Frambu,” he continues.
Working networks across borders
Representatives from the Czech Rare Disease association (CAVO), Ms. Anna Arellanesová and Mr. Rene Brectan visited Frambu stating:
“Our plan is to send several representatives of patient organizations, professionals and doctors to attend courses at Frambu. We have already started these courses. We expect that it will help us to improve assistance to patients, mainly in social activities, and will help to integrate patients into families and society.”
Improving public health in Europe
The aim of the Public Health Initiatives programme is to improve public health, reduce health inequalities in Europe and promote bilateral co-operation.
“As the Public Health Initiatives programmes progress in the different beneficiary countries we are starting to see good examples of fruitful collaboration between partners. Frambu is a leading example of how institutions can benefit from bilateral collaboration with several countries,” says Prof. Andrej Grjibovski, EEA Grants/ Norway Grants project manager at the NIPH.
The NIPH cannot complete its social mission “Better health for all” without broad collaboration with neighbouring countries, EU, WHO and other international stakeholders. Internationalisation is therefore both a prerequisite and a form of work that will be important in the coming years (Strategy 2014-2018 - Better health for all (pdf)).
|Collaborating partners visiting Frambu at their 60 year anniversary conference, which was broadcast to several European countries. L-r, Solfrid Johansen (NIPH), David K. Bergsaker (Frambu), Maria Joâo Freitas (Rarissimas Portugal), Milan Macek (Prague National Centre), Lisen Julie Mohr (Frambu), Marketa Havlovicova (Prague National Centre), Nuno Branco (Rarissimas Portugal)||Anna Arellanesová (CAVO), Lisen Julie Mohr (Frambu), David K. Bergsaker (Frambu) and Rene Brectan (CAVO)|