Introduction to Vereniging van Ehlers-Danlos patiënten – drs. Janine van de Ven
Chairperson of the Vereniging van Ehlers-Danlos patiënten & patient.
Welcome and Introduction to EDS ECHO – Dr. Alan Hakim
I am an Acute Physician and Rheumatologist with a specialist interest in heritable disorders of connective tissue. I received my Bachelors and Masters degrees in Medicine from Cambridge University and Addenbrookes Hospital; trained in Medicine at Addenbrookes in Cambridge and then University College London Hospitals, and received my consultant certification and Fellowship of the Royal College of Physicians in 2000 and 2005 respectively.
It was a privilege to serve as the Chief Medical Officer, and then Chief Operating Officer, of The Ehlers-Danlos Society through to 2021. I now support the Society as the Director of Education. I continue as a Member of the Society’s Medical and Scientific Board and as a Member of the Steering Committee of The International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders.
Introduction to Ehlers-Danlos Syndromes – Dr. Serwet Demirdas
Dr. Demirdas is a clinical geneticist at the Erasmus Medical Center in Rotterdam, The Netherlands, who has several publications concerning classical-like EDS (clEDS) type 1 and other types of EDS. In her clinical practice she sees many patients with different types of EDS while working together with several disciplines through an established clinical pathway within the Erasmus Medical center.
Community Voices – Cato Frederiks
My name is Cato Frederiks, I’ve been born in the Netherlands. I’ve been diagnosed with hEDS less than a year ago, after fighting for my diagnosis for more than two years with rapidly declining health.
Vascular-type EDS, a Risk Factor – Dr. Stan Janssen
I’m Stan Janssen. I was born and raised in Utrecht. I went to medical school in Amsterdam, the Free university. In 2008 I started working as an internist specialized in vascular medicine in Utrecht.
New Treatment Strategy for vEDS – Dr. Bart Loeys
Bart Loeys is a clinical geneticist, specialized in genetic disorders of the aorta and arteries. He is appointed a professor in cardiogenomics at the University of Antwerp/Antwerp University Hospital, Antwerp and the Radboud University Medical Center, Nijmegen, The Netherlands.
Session 1 Q&A
Local Anaesthetics, Narcosis and Pain Management in EDS – Dr. Albert van Wijck
Albert J.M. van Wijck studied Medicine in Utrecht, The Netherlands and was resident in Anaesthesiology in Heerlen and Maastricht. After 6 years in private practice, he returned to the University Medical Centre Utrecht and was head of the Pain Clinic from 1998-2013. The Pain Clinic is a tertiary pain centre that has multi-disciplinary facilities to treat all types of pain, including nerve blocks, spinal endoscopy, cognitive behavioura therapy and a pain management program. He initiated a post-graduate training in Pain Medicine for anaesthesiologists.
Social & Psychological Guidance with EDS – Dr. Lidwien Cornelissens
After studying at the conservatory in Utrecht, I studied Medical Ethics and Theology at the University of Leiden, followed by a PhD at the Vrije University of Amsterdam. This was followed by an education in Amsterdam as a psychotherapist followed by a procedure of seven years to become a qualified psychoanalyst. This was a wonderful base to start and finish the Intensive Short Term Dynamic Psychotherapy education. After working for seven years in the Delta Psychiatric Hospital in Portugal, I started a department at the Alrijne General Hospital in Leiderdorp for additional treatment for oncological patients with severe mental problems. Next to this, I have a private practice for 20 years. As a volunteer and EDS patient myself, I am member of the Dutch EDS Medical Board and editor of two books about the Ehlers-Danlos Syndrome. I am married, have a daughter and live with my husband and two dogs – one is a guide dog the other retired- in the city of Leiden.
Session 2 Q&A
Positive Health, Model to Discuss Self-Management of Living with a Chronic Disease – Dr. Ria den Hertog
I am an experienced lecturer and researcher with a demonstrated history of working in nursing practice (pediatric nurse, home care nurse and nurse practitioner). I work as a lecturer and researcher in the training program for Bachelor Nursing students and Master Playing Therapy students at the university of applied sciences in the Netherlands. Further, I am experienced in research in nursing education and nursing ethics, research methodology, curriculum development, and teacher professionalization. I hold a master degree in Nursing Sciences and also in Educational Sciences; my PhD-study was about ‘Patient preferences in nursing decision making’ (nursing ethics). My current postdoc research is about developing practical wisdom in nursing decision making of nursing professionals in individual tailored care. The central theme in my studies is how to take into account the patient’s voice in nursing decision making.
How Care is Organised: A Practical Insight From Erasmus MC and Maasstad Hospital – Dr. Marijn Vis & Dr. David Spelt
Dr Vis is a rheumatologist at the Erasmus MC in Rotterdam. His main research interests are psoriatic arthritis and ultrasonography.
Since 2011 he is running a special outpatient clinic for patients with hypermobility problems. The outpatient focuses diagnosis and interpreting symptoms.
Medical specialist in physical and rehabilitation medicine with special interest in rehabilitation for:
- IC and burn patients
- trauma and lower limb amputation
- complex and diabetic foot problems
Hypermobility Issues with EDS – Dr. Mark Scheper
I am a clinical physical therapist and movement scientist. Currently i work in both Rotterdam (NLD) and Sydney (AUS). My current research focuses on the impact of rare and chronic diseases in children with special interest for disability and social inclusion. A second focal point of my research is the use of data driven technology in clinical practice. Implementing remote sensing, big-data and artificial intelligence in daily clinical practice and how to prepare the professional for the future.
Session 3 Q&A
Outro from Vereniging van Verpleegkundig Specialisten (V&VN VS) – Nathalie van Elck
- Board member of the Dutch Association of Nurse Practitioners
- Nurse Practitioner in general practice
Outro from The Ehlers-Danlos Society – Prof. Lara Bloom
Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic and invisible diseases, specialising in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Before joining the Ehlers-Danlos Society Lara ran EDS UK from 2010-2015.
Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert.
Commemorating ten years in the field of patient advocacy for the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), chronic illnesses, and rare diseases, Lara was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020.
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