AOP Health hosts "Living with a Rare Disease" Evening Talks and Panel Discussion
February 28, 2023 marked the annual Rare Disease Awareness Day.
AOP Health, a longstanding supporter of Rare Disease research, hosted this year’s Rare Disease Awareness evening of short talks followed by a panel discussion that included: rare disease patients, a clinical pyschologist as well as clinical research experts, for a live discussion revolving around the topic of "Living with a Rare Disease".
Rare Diseases currently affect up to 36 million people living in the EU, and around 300 million people worldwide. A disease is considered "rare" when it affects less than 1 in 2,000 citizens, but there are thousands of types of rare diseases. While one rare disease may affect only a handful of patients, another may touch as many as 245 000. Around 80% of rare diseases are of genetic origin and, of those, 70% already start in childhood.1
1source: European Commission for Public Health
AOP Health welcomed speakers Eva Otter (Vice-President PH Austria & President of PHA Europe), Prof. Tanja Stamm (Institute for Outcomes Research, MedUni Vienna), Dr. Maria Resch (clinical and health psychologist), Peter Löffelhardt (CEO and Chairperson of GMPNSF, Global MPN Scientific Foundation and Head of MPN ES & CH), Moderation Mag. Sabine Nikolay, Dr. Martin Steinhart (CEO AOP Orphan Pharmaceuticals GmbH). Not pictured here: Dr. Elena Greschner (Chairwomen of MPN Austria Support Group)
AOP Health’s Rare Disease Day Talk put a spotlight on the importance of psychosocial care and clinical trials:
Vienna, February 29 (February 28 in 2023) marks annual Rare Disease Day. AOP Health took advantage of the awareness day to host an evening event at Vienna’s historic Billrothhaus, which is also home to the College of Vienna’s Physicians.
Set in the medical science library of the building, the evening started off with opening words from AOP Health Co-CEO Martin Steinhart emphasizing the importance of dialogue and exchanging information about rare diseases.
Inspiring Impulse Talks
The first hour included five impulse talks by patients, health care professionals and our CEO, Martin Steinhart, covering a range of topics from the point of view of those who are affected by rare diseases, those who treat them and from a research angle.
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Lively Panel Discussion
During the second part of the evening, the speakers discussed the status and potential of the situation concerning rare diseases in Austria.
The lively exchange highlighted how the collaboration of healthcare professionals with the pharma industry plus the input from patients and patient organizations is essential for advancing treatment options for those affected by rare diseases -- starting with a collaborative effort when designing studies.
All parties emphasized the importance of recruiting patients for studies and agreed on the necessity of patient education in lay terminology.
„It can take a long time to get diagnosed, to find a doctor who can treat you and find a medical treatment that can help you. Sometimes years pass before you find a physician who knows how to treat you or until you find a treatment."
“The most important thing is to have a clear diagnosis - this is the moment when you understand what’s happening to you, and it is also the moment when, despite the shock, you can begin to design how your life is going to move forward, with help from others."
„I gain my strength from helping other patients, especially new patients. What can we do to raise awareness? Support patients! Patient organizations are getting more visible and getting “louder” and this is the reason why we are being heard.“
"Outcomes Research" focuses not only on clinical study results but as well self-reported patient outcomes - the status of the patient's health condition coming directly from the patient without interpretation of the patient's response by a clinician or anyone else.“
"Reconcile with your disease and the life you wanted, in order to live the life you have. We're here on this planet earth to be happy."
AOP Health has been researching rare diseases for more than 25 years, at a time when very few people were doing this, and where there were very few treatment options. The situation has improved, but research is still essential for developing new therapies for not only their effectiveness but also patient tolerance.“