In December 2011, Pro Rare Austria, an umbrella group for rare disease patient organisations was established. Instigated by Dr. Rainer Riedl, spokesman for epidermolysis bullosa patient organisation DEBRA Austria, Pro Rare Austria gathers Austria’s individual rare disease patient associations into a coalition that can coordinate efforts to work together on behalf of rare disease patients in the country. In the short time since its formation, the Pro Rare Austria team has already organised events for Rare Disease Day 2012 in Vienna and participated in other rare disease events.

Involvement in the drafting of a national plan/National Coordination Centre for Rare Diseases
Delegates of Pro Rare and other Austrian patient organisation groups have been invited to join the newly established Expert Committee for Rare Diseases. Following the European Council Recommendation on an action in the field of rare diseases, which encourages all EU Member States to implement a national plan for rare diseases, the Austrian Health Advisory Board of the Austrian Ministry of Health established a subcommittee for rare diseases in May 2009, consisting of 17 members from 13 different organisations or institutions. Coordinated by the Austrian Orphanet team, this subcommittee has laid the foundation for a national plan of action for rare diseases. To support this, a National Coordination Centre for Rare Diseases, the Nationale Koordinationsstelle für Seltene Erkrankungen (NKSE), was established as a first step in the development of a national plan. The founding of the NKSE included sustained funding for Orphanet as the national information system for rare diseases. Members of the subcommittee for rare diseases include the Expert Committee on Rare Diseases in addition to a strategic platform made up of delegates from the Ministry of Health, academic experts and representatives from Austrian social security institutions. Amongst the activities of the NKSE is a role as a driving force in drawing up the national plan of action; raising awareness among professionals and patients on the topic of rare diseases; performing a large-scale needs assessment survey involving academics, stakeholders and – for the first time in Austria – patients, and draft a report (planned to be published in the summer of 2012); draft eligibility criteria for the establishment of Centres of Expertise – based on the EUCERD recommendations – and discuss them with Austrian stakeholders; serve as a communication hub between actors in the field; and function as a focal point for European activities in the field of rare diseases.