About Pro Rare Austria, Allianz für seltenen Erkrankungen
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