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National Action Plan for Rare Diseases

(Vienna, 08th April 2015) To mark Rare Diseases Day on 28 February 2015, Health Minister Sabine Oberhauser has unveiled the "National Action Plan for Rare Diseases". The action plan (or NAP.se for short) is intended to provide better care for sufferers. Experts from the MedUni Vienna have played a major role in its creation.

The contents of the National Action Plan were drafted by the National Coordination Centre for Rare Diseases (NKSE) at Gesundheit Österreich GmbH (GÖG) in collaboration with the supporting committees and have been coordinated with other stakeholders in the healthcare sector. Till Voigtländer from the MedUni Vienna's Clinical Institute of Neurology, as a clinical specialist in the field of rare diseases, is the professional and content-related leader of the NKSE.

Better care
The National Action Plan for Rare Diseases is intended to provide better care for sufferers. At the same time, the aim is to eliminate a lack of awareness and knowledge of rare diseases in the field of medicine, among non-clinical professions and the general public.
This is because, "Despite the low prevalence of individual diseases, we can assumed based on projections that Austria will have around half a million people affected by this type of disease," says Health Minister Sabine Oberhauser at the presentation. The action plan sets out nine key areas that take account of both European recommendations and national requirements. These include, among others, the inclusion of rare diseases in Austria's health and social system, the promotion of research and the improvement of access to treatment.


Specialist centres

The expertise of existing organisations is to be brought together instead of creating new structures. Centres specialising in rare diseases must satisfy high quality and performance criteria in order to ensure the best possible care for sufferers and their families. More intensive collaboration between the centres will help to ensure that highly specialist expertise is pooled and resources can be used together as efficiently as possible.


Development in Austria

The road to the National Action Plan began over eleven years ago. Till Voigtländer has been a project partner of Orphanet (www.orpha.net), the international reference portal for rare diseases, since 2004. In 2008, the Orphanet team organised the first Rare Diseases Day in Austria on 29th February. With the support of a series of patient self-help groups, a petition was sent to the Ministry of Health to create a national action plan for rare diseases and the signatures collected handed over as part of the event at the Vienna General Hospital in the presence of the then Health Minister Andrea Kdolsky. In response to this, a sub-committee of the Austrian National Institute of Health was set up and work was begun on the National Action Plan.


In 2011, the Ministry set up a National Coordination Centre for Rare Diseases (NKSE) at Gesundheit Österreich GmbH (GÖG). Its professional and content-related leader is Till Voigtländer. From 2011 to 2014, the MedUni Vienna was directly involved with the work at the NKSE through a cooperation project with the GÖG funded by the Federal Ministry of Health (MedUni Vienna experts involved were Ursula Unterberger and Christine Schragel). Together with the two supporting committees, the expert group on rare diseases and the strategic platform for rare diseases, the contents of the National Action Plan were drafted by the NKSE and coordinated with the other stakeholders in the healthcare system. On 28 February 2015, the document was finally presented by Federal Minister Sabine Oberhauser.


When is a disease classed as rare?

According to the EU-wide definition, a disease is classed as rare if it occurs in no more than five people per 10,000 inhabitants. Often, far fewer people suffer a rare disease, of which there are estimated to be up to 8,000 different ones. "Rare diseases are significant in terms of health policy. Everyone and every sufferer counts", said Health Minister Sabine Oberhauser.


» The National Action Plan for Rare Diseases (German)
» Orphanet