EURORDIS "Black Pearl Award" for the EB House Austria
The EURORDIS Black Pearl Award is presented annually at a festive evening gala in Brussels and recognizes outstanding achievements and extraordinary work for the community of people with rare diseases. On February 18, 2020, the world's first special clinic for "butterfly children", the EB House Austria, received the coveted award in the "Holistic Care" category. Dr. Rainer Riedl, chairman and founder of DEBRA Austria and initiator of the EB House accepted the award.
"The Black Pearl Award is a confirmation for a long and difficult path to comprehensive medical care and it gives butterfly children hope for a life without blisters, wounds and pain," said Dr. Rainer Riedl delighted about this special award for the EB House. As the father of a daughter affected by EB, he was instrumental in founding the non-profit patient organization DEBRA Austria in 1995. "Our goal at the beginning - exchange of experience and mutual support - was soon complemented by an even bigger one: the creation of an EB special clinic," recalls Riedl.
Together with Univ.-Prof. Dr. Helmut Hintner, the former head of the University Clinic for Dermatology Salzburg, and with the support of countless donors, the world's first special clinic for "butterfly children" opened its doors at the University Hospital of the Paracelsus Medical Private University Salzburg in 2005. Since then, competent medical care has been provided for those affected by the rare skin disease epidermolysis bullosa (EB for short): The holistic approach is particularly evident in the fact that in addition to the outpatient clinic, a research unit, a study center and an academy are also housed in the EB House. Today, the EB House Austria is a prime example of professional care for patients with rare diseases and it was named the first center of expertise for rare skin diseases in Austria in 2017 and is now part of the ERN Skin (European Reference Networks for Rare Skin Disorders). The EB House Austria has also been ISO 9001 certified since October 2019.
The Holistic Care Award recognized the outstanding and holistic approach of the EB House Austria in the multidisciplinary care of EB patients by proven EB experts at the University Hospital Salzburg. EB patients are treated according to the latest state of medicine, doctors are trained and research is carried out on ways to alleviate and heal EB. Thanks to its high reputation as the world's leading specialist clinic, the EB House Austria is visited by "butterfly children" from all over Europe and serves as a model for similar centers worldwide. "The fact that we have now received the Black Pearl Award is a great international recognition that can only be compared to an Oscar in the film industry," said Prof. Johann Bauer, head of the University Clinic for Dermatology.
The EURORDIS Black Pearl Award has been presented in twelve categories every February, the month of rare diseases, since 2012. The special award recognizes great achievements and the outstanding commitment of patient representatives, patient organizations, political decision-makers, scientists, companies or the media, which contribute to improving the life situation of those affected by a rare disease. EURORDIS is a non-governmental patient-controlled alliance of 884 patient organizations from 72 countries and gives 30 million patients with rare diseases across Europe a voice.
The EURORDIS Black Pearl Award is one of the most important awards in the rare disease community. Just as the creation of a natural black pearl is extremely rare, the recipients of the EURORDIS Black Pearl Awards are also unique. Because: The performance of the award winners is of the utmost importance to improve the lives of those affected by a rare illness.