Complete Dedication to Others
Great initiatives often start for a small, very personal reason. That was also the case with Rainer Riedl. The business informatics graduate with a PhD was in the middle of a successful career: department head at T-Mobile Austria, 30 employees reporting to him, secretary, company car, good salary, married, two children - life had been kind to Rainer Riedl.
That is, until fate brutally struck this ideal world in the mid-1990s. Strictly speaking, it was not fate, but statistics. There are very rare cases of diseases that affect perhaps one in 15,000 people. Riedl's daughter Lena was one of them. The girl was born with epidermolysis bullosa (EB), an extremely rare skin disease. In Austria, just 500 people are affected by it, and severely. Because anyone who gets EB suffers from it for the rest of their life.
The cause is a genetic defect; there is no effective therapy. The skin of EB patients is sensitive; people are literally “thin-skinned”. Lena belongs to these so-called butterfly children because her skin is as sensitive as a butterfly's wings. Cracks, blisters and wounds are part of the patients' everyday life, as is the daily wound care. The diagnosis of EB in Lena's case had a triggering effect on Rainer Riedl, which also set his life on a new course. At first, the Riedls looked after their daughter as caring parents.
The father continued to work for T-Mobile, but a normal private life was out of the question. Several times a year he had to drive home in a station wagon loaded to the roof with medicine, gauze bandages and other dressing material - the wounds on his daughter's skin had to be dressed practically every day, sometimes several times. And medical expertise did not seem to be available. The Riedls sought advice at the Vienna General Hospital, hoping to find doctors there who were well acquainted with the clinical picture of EB - in vain. Then they turned to the Ministry of Health. This brought them into contact with a German self-help group. "Through them," says Riedl, "we learned about a specialist at the Salzburger Landeskliniken."
Meetings with this expert and his team soon led to the idea of founding a self-help organisation to give EB patients a voice and, above all, help, and "to increase the chance of a cure through targeted, first-class research". An ambitious undertaking, he approached the project with corresponding determination. Riedl founded Debra Austria, a non-profit organisation that belongs to the globally operating umbrella organisation Debra International and has long since become the spearhead in the fight against the insidious disease, EB. He founded the organisation in Salzburg, where he had found physicians who knew about EB. Debra also brought forth Pro Rare Austria as an umbrella organisation for patient organisations and self-help groups in the field of rare diseases.
Today, it is impossible to imagine the lives of many patients and relatives in Austria without Pro Rare and Debra. There, they find support ranging from practical help from a hand-picked network of experts to lobbying in the public health system so that patients with rare diseases like EB, who have been neglected for many years, are no longer neglected. Admittedly, it was a long and not infrequently arduous road to get there. Rainer Riedl approached the initiative the same way he did his job at T-Mobile: thoroughly and professionally. He had enough ideas right from the start; first and foremost, to set up a clinic in Salzburg specialising in EB, where patients could finally find highly professional treatment.
But this alone required a seven-figure budget. Riedl took advantage of his professional network, built up the fundraising, organised everything necessary for a functioning donation system so that the organisation could become operational. "I thought big right from the beginning, which also included making the phenomenon of rare diseases known to the public in the first place, building up a sort of brand”, as Riedl puts it. Some advertising professionals were so enthusiastic about the project that they developed a pro bono campaign. The campaign was so successful that the Pro-Rare advertisement was awarded a Gold Lion and a Silver Lion at the Cannes Lions International Festival of Creativity, a kind of Oscar competition for the worldwide advertising guild.
