Honorary president, European Patients’ Forum
European Patients’ Forum, Brussels, Belgium
Chairman Ågrenska Foundation, Sweden
Topic for the talk
The patient’s pathway – necessitates a shift of paradigms
Having a chronic diagnosis provides the person with a unique perspective and knowledge about the true impact the condition has on your life. Your diagnosis affects all aspects of your life. This perspective is your own, and your involvement is paramount in your rehabilitation, cure and care. We now understand that when a patient can participate in their own health and treatment, it leads to much better outcomes. A holistic view is necessary, which is why all involved partners in the patient’s journey through life must cooperate. This means that healthcare, social care, school, insurance, and adult life need to be involved. It is not because healthcare professionals are not trained or skilled enough; it is simply because “it takes one to now one”. You, as a patient, possess a unique perspective! Even though we have known this for many years, we still do not apply it in ordinary healthcare. Why? The reason is said to be multiple, but even so, it has to stop now.
Anders Olauson has extensive and longstanding experience in establishing international and national organization for patient organisations and advocators. He has served as president and board member for the EURORDIS, a non-profit international alliance for rare disease patient organisations and has also served as president for European Patients’ Forum (EPF) from 2005 until 2016 when he was appointed Honorary President för EPF. His significant contributions include his participation in the establishment of The Committee for Orphan Medicinal Products at the European Medicine Agency. In Sweden, he was instrumental in the establishment of the Ågrenska Centre, a national centre for rare health conditions, for which he has served as its director and is presently chairman. One of his notable achievements is the founding of The Ågrenska Virtual International Academy, a research centre dedicated to rare conditions.
Anders Olauson has received numerous honours, including being appointed a member of ECOSOC within the United Nations in 2005, and the EURORDIS Lifetime Achievement Award. The Swedish government recognized Anders’ dedication by appointing him as a member of the Advisory Council at The National Board and Welfare from 2008 to 2014. His commitment was further acknowledged when he received HM The King of Sweden’s Medal.