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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 (14)


































VASCERN-VASCA Consensus Statement: Sirolimus and Fertility
December 20 2023

This document is based on the statement elaborated by ASPHO SIG (The American Society of Pediatric Hematology/Oncology Special Interest Group) and CaNVAS (Consortium of iNvestigators of Vascular AnomalieS), USA in December 2023, and further revised by the VASCERN (European Reference Network for Multisystemic Rare Vascular Diseases) VASCA (Vascular Anomalies) working group.


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

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 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. 


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

VASCERN Hereditary Haemorrhagic Telangiectasia (HHT) Working Group – Statement concerning SARS-CoV-2 vaccination for patients with HHT
February 04 2021

VASCERN Hereditary Haemorrhagic Telangiectasia (HHT) Statement on COVID-19
February 04 2021

Claire L. Shovlin, Carlo Sabba, Hans Jurgen Mager, Anette Kjeldsen, Ulrich Sure, Elisabetta Buscarini and Sophie Dupuis-Girod.


Consensus Statement on COVID-19 vaccination for patients with vascular Ehlers-Danlos syndrome
January 18 2021

The VASCERN Medium Sized Arteries Working Group experts provided an opinion statement on vaccination for patients with vascular Ehlers-Danlos Syndrome (vEDS).


European Reference Network for Rare Vascular Diseases (VASCERN) position statement on cerebral screening in adults and children with hereditary haemorrhagic telangiectasia (HHT)
June 29 2020

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. European Reference Network for Rare Vascular Diseases (VASCERN) position statement on cerebral screening in adults and children with hereditary haemorrhagic telangiectasia (HHT). Orphanet J Rare Dis. 2020 Jun 29;15(1):165. doi: 10.1186/s13023-020-01386-9. PMID: 32600364; PMCID: PMC7322871.


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

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 on COVID-19 & vascular Ehlers-Danlos Syndrome
March 03 2020

With the global spread of the novel coronavirus SARS Cov-2, causing COVID 19, the VASCERN Medium Sized Arteries Working Group experts echoed some of the WHO guidelines regarding the virus specific to the vascular Ehlers-Danlos Syndrome (vEDS) community.


Liver involvement in hereditary hemorrhagic telangiectasia: consensus recommendations
November 26 2006

Buscarini E, Plauchu H, Garcia Tsao G, White RI Jr, Sabbà C, Miller F, Saurin JC, Pelage JP, Lesca G, Marion MJ, Perna A, Faughnan ME. Liver involvement in hereditary hemorrhagic telangiectasia: consensus recommendations. Liver Int. 2006 Nov;26(9):1040-6. doi: 10.1111/j.1478-3231.2006.01340.x. PMID: 17032403.


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