Vascular surgery as a typical transversal special discipline plays an important role in multi-disciplinary treatment of rare vascular diseases. Over time, the range of diagnostic and therapeutic procedures provided by this special discipline expanded remarkably. Vascular surgeons today proceed both open surgical and endovascular procedures. Although endovascular treatment is getting more and more important, open surgical procedures remain the treatment of choice for some rare diseases. Often, the evidence for choosing one of the alternative approaches is insufficient. Besides most commonly treatment of genetic aortic diseases and vascular malformations, there are some rare diseases that are more exclusively treated by vascular surgeons than by other special disciplines. These diseases therefore do not fit into the other disease related workgroups, that involve a more multi-disciplinary approach. The work group for vascular surgery was implemented, to create an umbrella for these inhomogeneous rare diseases.

Vascular Surgery provides a strong part in the multidisciplinary treatment of rare vascular diseases. This workgroup aims to a number of rare diseases mailny diagnosed and treated by vascular surgeons:

  • Aortic non-hereditary diseases: Mid-aortic syndrome (Orphanet 1456), aorto-caval fistula, aorto-enteric fistula, aortic arch anomalies (Orphanet 1132, 2299, 99081), aneurysm of abberant right subclavian artery (dysphagia lusoria) (Orphanet 99082), bovine trunk, mycotic aortic aneurysm
  • Compression syndromes: Thoracic outlet syndrome (Orphanet 97330), thoracic inlet syndromes, nutcracker syndrome of the left renal vein (Orphanet 71273), dunbar syndrome (MALS, CACS), other visceral compression syndromes, popliteal entrapment syndrome
  • Vascular tumours: Carotid paraganglioma (Orphanet 276627, 276621, 94080, 324299, 29072), kaposiform hemangioendothelioma (Orphanet 2122), retiform and papillary hemangioendothelioma, epitheloid hemangioendothelioma (Orphanet 157791), angiosarcoma (Orphanet 263413), kaposi sarcoma (Orphanet 33276)
  • Isolated dissections (non hereditary): Supra-aortic dissections, internal carotid agenesis (Orphanet 981), isolated abdominal dissections, isolated mesenteric artery dissection
  • Peripheral aneurysms (non hereditary): Extracranial carotid artery aneurysm, other supra-aortic aneurysms, visceral aneurysms, renal artery aneurysms, aneurysms of lower extremities (e.g. femoral artery aneurysm and popliteal artery aneurysm), mycotic aneurysms
  • Other rare vascular diseases: Adventitial cystic disease (ACD), iliac artery endofibrosis (“cyclists disease”)
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GERMANY

Chair

Pr. Sebastian DEBUS, FEBS, FEBVS, Chairman
Pr. Yskert VON KODOLITSCH
Dr. Christian BEHRENDT
Department of Vascular Medicine
Department of General and Interventional Cardiology
University Heart Center Hamburg
University Medical Center Hamburg-Eppendorf
Hamburg, Germany

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SWEDEN

Co-chair

Pr Martin BJORCK, MD, PhD, Chair

Pr Anders WANHAINEN, MD, PhD, Chief of Department
Department of Vascular Surgery
Uppsala University Hospital
Uppsala, Swedden

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BELGIUM

Dr Natzi SAKALIHASAN, MD, PhD
Department of Cardiac and Vascular Surgery
University Hospital Liège
Liège, Belgium

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DENMARK

Dr Jesper LAUSTSEN, Head of Department
Department of Cardiothoracic and Vascular Surgery
Department of Cardiology
Aarhus University Hospital
Aarhus, Denmark

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GERMANY

Pr. Hans-Henning ECKSTEIN
Department for Vascular and Endovascular Surgery
The University Hospital Klinikum rechts der Isar
Munich, Germany

Pr. Michael JHM JACOBS, MD, PhD
Department of Vascular Surgery
University Hospital RWTH Aachen
Aachen, Germany

Pr. Thomas SCHMITZ-RIXEN
Department of Vascular and Endovascular Surgery
University Hospital Frankfurt
Frankfurt, Germany

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HUNGARY

Pr. Zoltan SZABOLCS
Pr Zoltan SZEBERIN
Dr. Kalman BENKE
Semmelweis University, Heart and Vascular Center
Budapest, Hungary

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NETHERLANDS

Pr. G. J. de BORST, Chief
UMCU Research
Department of Vascular Surgery
teamUniversity Medical Center Utrecht
Utrecht, Netherlands

Pr. Michael JHM JACOBS
Department of Vascular Surgery, Heart and Vascular Center
Maastricht University Medical Center
Maastricht, Netherlands

Pr. Willem WISSELINK
Pr. Jan D. BLANKENSTEIJN
Department of Surgery
VU University Medial Center Amsterdam
Amsterdam, Netherlands

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PORTUGAL

Pr. Doutor José FERNANDES E FERNANDES, MD, PhD
Prof. Doutor Frederico BASCOS GONCALVES, MD, PhD
Vascular Surgery
Department of Cardiology
British Hospital Lisbon XXI
Lisbon, Portugal

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SWEDEN

Pr Timothy A. RESCH, MD, PhD, Associate Professor
Pr Stefan ACOSTA, MD, PhD, Chair
Malmö Skane University Hospital
Malmö, Sweden

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UNITED KINGDOM

Professor A. ROSS NAYLOR, MD, MBChB, FRCS, Honorary Professor of Vascular Surgery and Consultant Vascular Surgeon
Dr. Tryfon VAINAS, MD
Department of Vascular Surgery
Department of Cardiovascular Sciences
Department of Cardiology
University of Leicester
University Hospital of Leicester NHS Trust
Leicester, UK

  • Implement a data privacy compliant registry platform (OSSE registry) to collect data on vascular diseases
  • Provide highly specialised healthcare for the rare or low prevalence complex diseases within our workgroup
  • Establish clear patient pathways
  • Evaluate and implement solutions to use information and communication technology (ICT) to provide patient-centered treatment and care
  • Establish clinical guidelines and Standard Operating Procedures (SOPs) for the rare or low prevalence complex diseases within our workgroup
  • Implement quality improvement programs
  • Collaborative research on the diseases within our workgroup

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