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”)

• 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