Category: Women Trailblazers

As EPP is an extreme rare, but a truly painful disease, someone had to stand up for those patients. Tinne did this and still fights every day for the patients. By networking with patientorganisations, patients, doctors, governments, national medical agencies all over the world. She went to the EMA 7 years ago to give a testimony on patients with EPP, gathered the pharmaceutical company together there, and succeeded in making EPP a registered disease in Europe, at this moment the procedure is running at the FDA in the united states. After registration different countries already reimburse the medication, which takes away the pain and make patients lead a more normal life (as the disease can't cure). In the other countries we are still fighting for reimbursement! Tinne Cools