Rare Disease Dayin Austria
Austrian patient organisations have been celebrating Rare Disease Day since 2009, hosting exciting events such as the Rare Disease March and organising rare disease information booths to inform and educate the general public.
The highlight of the 2014 was, without doubt, the inauguration of the Center for Rare and Undiagnosed Diseases (CeRUD) in Vienna.
Pro Rare Austria was founded in 2011 as an umbrella organisation for those living with a rare disease in Austria. They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder. Find their contact information at the bottom of this page.
If you would like to be involved in any way, or you know of any events which are not listed here, please get in touch!
Write to us at firstname.lastname@example.org.
National Alliance representing Austria
Pro Rare Austria is the national alliance for rare diseases and was founded in the end of 2011 as a not-for-profit association by patients and parents of affected children. Pro Rare Austria represents about 400,000 people in Austria living with a rare disease. Pro Rare Austria is a member of EURORDIS.
As an umbrella organisation, Pro Rare Austria represents more than 60 patient support groups in Austria and acts as an advocate for rare disease patient needs. Our mission is to raise public awareness and improve the medical and social care for our members.
Pro Rare Austria
… advocates the interests of people living with rare diseases
… facilitates networks between rare disease patient groups
… raises public awareness about rare diseases and patient needs
Pro Rare Austria’s goals are:
legal recognition of all defined rare diseases
reflection of the special requirements of rare diseases in the national health system
improvement of clinical care through implementation and designation of Centres of Expertise
improving rare disease diagnostics, e.g. by speeding up the process
driving (basic and clinical) research in the field of rare diseases
recognition of the many achievements of patient support organisations