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Clinical Decision Support Tools

Expert consensus statements

Expert consensus statements play a critical role in guiding clinical decision-making and improving patient outcomes. Our experts in rare vascular diseases have developed consensus statements drawing from the latest research and clinical data to provide evidence-based recommendations for the diagnosis, treatment and management of these diseases.

You can choose from the research tool below to view available consensus statements by our Rare Disease Working Groups.

Results (17)



































Consensus recommendations on lymphedema in Phelan-McDermid syndrome
April 17 2023

VASCERN Vascular Anomalies (VASCA) Working Group – Statement concerning SARS-CoV-2 Vaccination for Patients with Vascular Malformations
March 29 2023

VASCERN Vascular Anomalies (VASCA) Working Group COVID-19 Statement (March 20, 2020)
March 29 2023

Initiated by the patient advocacy groups in Europe and the United States and their medical advisory teams and approved by the VASCA WG.


Consensus statement of the VASCERN HTAD Working Group (January 23, 2019)
March 20 2023

In patients with HTAD, Fluoroquinolones should be used with caution because of a possible risk for exacerbation of aortic disease.  The use of alternatives is preferred while awaiting further evidence.


Consensus statement for the screening and management of patients with pathogenic ACTA2 variants (November 21, 2019)
March 20 2023

Ingrid M. B. H. van de Laar, Eloisa Arbustini, Bart Loeys, Erik Björck, Lise Murphy, Maarten Groenink, Marlies Kempers, Janneke Timmermans, Jolien Roos-Hesselink, Kalman Benke, Guglielmina Pepe, Barbara Mulder, Zoltan Szabolcs, Gisela Teixidó-Turà, Leema Robert, Yaso Emmanuel, Arturo Evangelista, Alessandro Pini, Yskert von Kodolitsch, Guillaume Jondeau, Julie De Backer. European reference network for rare vascular diseases (VASCERN) consensus statement for the screening and management of patients with pathogenic ACTA2 variants. Orphanet J Rare Dis 14,264 (2019) doi:10.1186/s13023-019-1186-2


VASCERN Hereditary Haemorrhagic Telangiectasia (HHT) Working Group – Statement concerning SARS-CoV-2 vaccination for patients with HHT
March 13 2023

VASCERN Hereditary Haemorrhagic Telangiectasia (HHT) Statement on COVID-19 (March 2020)
March 13 2023

European Reference Network for Rare Vascular Diseases (VASCERN) position statement on cerebral screening in adults and children with hereditary haemorrhagic telangiectasia (HHT)
March 13 2023

Eker OF, Boccardi E, Sure U, Patel MC, Alicante S, Alsafi A, Coote N, Droege F, Dupuis O, Fialla AD, Jones B, Kariholu U, Kjeldsen AD, Lefroy D, Lenato GM, Mager HJ, Manfredi G, Nielsen TH, Pagella F, Post MC, Rennie C, Sabbà C, Suppressa P, Toerring PM, Ugolini S, Buscarini E, Dupuis-Girod S, Shovlin CL. Orphanet J Rare Dis. 2020 Jun 29;15(1):165. doi: 10.1186/s13023-020-01386-9. PMID: 32600364


Safety of direct oral anticoagulants in patients with hereditary hemorrhagic telangiectasia
March 13 2023

Shovlin CL, Millar CM, Droege F, Kjeldsen A, Manfredi G, Suppressa P, Ugolini S, Coote N, Fialla AD, Geisthoff U, Lenato GM, Mager HJ, Pagella F, Post MC, Sabbà C, Sure U, Torring PM, Dupuis-Girod S, Buscarini E; VASCERN-HHT. Safety of direct oral anticoagulants in patients with hereditary hemorrhagic telangiectasia. Orphanet J Rare Dis. 2019 Aug 28;14(1):210. doi: 10.1186/s13023-019-1179-1. PMID: 31462308; PMCID: PMC6714298.


Safety of thalidomide and bevacizumab in patients with hereditary hemorrhagic telangiectasia
March 13 2023

Buscarini E, Botella LM, Geisthoff U, Kjeldsen AD, Mager HJ, Pagella F, Suppressa P, Zarrabeitia R, Dupuis-Girod S, Shovlin CL; VASCERN-HHT. Safety of thalidomide and bevacizumab in patients with hereditary hemorrhagic telangiectasia. Orphanet J Rare Dis. 2019 Feb 4;14(1):28. doi: 10.1186/s13023-018-0982-4. PMID: 30717761; PMCID: PMC6360670.


Prevention of serious infections in hereditary hemorrhagic telangiectasia: roles for prophylactic antibiotics, the pulmonary capillaries-but not vaccination
March 13 2023

Shovlin C, Bamford K, Sabbà C, Mager HJ, Kjeldsen A, Droege F, Buscarini E, Dupuis-Girod S; VASCERN HHT. Prevention of serious infections in hereditary hemorrhagic telangiectasia: roles for prophylactic antibiotics, the pulmonary capillaries-but not vaccination. Haematologica. 2019 Feb;104(2):e85-e86. doi: 10.3324/haematol.2018.209791. PMID: 30705116; PMCID: PMC6355489.


European Reference Network For Rare Vascular Diseases (VASCERN) Outcome Measures For Hereditary Haemorrhagic Telangiectasia (HHT)
March 13 2023

Shovlin CL, Buscarini E, Kjeldsen AD, Mager HJ, Sabba C, Droege F, Geisthoff U, Ugolini S, Dupuis-Girod S. Haematologica. 2019 Feb;104(2):e85-e86. doi: 10.3324/haematol.2018.209791.


VASCERN Pediatric and Primary Lymphedema (PPL) Working Group – Statement concerning SARS-CoV-2 vaccination for patients with lymphedema
March 09 2023

COVID-19 statement by the Lymphoedema Support Network
March 09 2023

The Pediatric and Primary Lymphedema (PPL) Working Group endorses the COVID-19 statement by the Lymphoedema Support Network. 


Medium-Sized Arteries (MSA) Working Group Statement on COVID-19 vaccination for patients with vascular Ehlers-Danlos syndrome (vEDS)
March 03 2023

VASCERN Heritable Thoracic Aortic Diseases (HTAD) Working Group statement on COVID-19 (March 2020)
January 03 2023

Medium-Sized Arteries (MSA) Working Group statement on COVID-19
March 03 2020

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