The outcome of the conference was the generation of 33 recommendations for the diagnosis and management of HHT, with at least 80% agreement amongst the expert panel for 30 of the 33 recommendations.

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sensitivity of this test (as low as 60% in some reports) might have led to misclassification and diagnostic bias. 7 However, this preliminary report of an association between hypogeusia or hyposmia and COVID19 diagnosis in patients with ILI suggests that these symptoms might be a useful tool for initial diagnostic workup in patients with suspected COVID19. These symptoms, which are easy to collect, could be used for mass screening, by professionals with limited medical knowledge, and through telemedicine. Larger prospective studies are required to confirm these preliminary findings.We declare no competing interests.

Hereditary haemorrhagic telangiectasia (HHT) is a multisystemic vascular dysplasia that leads to nosebleeds, anaemia due to blood loss, and arteriovenous malformations (AVMs) in organs such as the lungs, liver and brain. HHT is estimated to affect 85,000 European citizens, but most health care providers have limited prior HHT exposure or training.Outcome Measures were developed and implemented by the HHT Working Group of the European Reference Network for Rare Vascular Diseases (VASCERN), in order to maximise the number of patients receiving good care. The measures specifically target areas where optimal management reduces morbidity and mortality in HHT patients, and were designed to be robust to emerging new evidence. Thresholds are the percentage of patients in particular settings who have been recommended screening, or provided with written advice. The 5 Outcome Measures cover (1) pulmonary AVM screening; (2) written nosebleed advice, (3) assessment of iron deficiency; (4) antibiotic prophylaxis prior to dental and surgical procedures for patients with pulmonary AVMs, and (5) written advice on pregnancy. They are not a blueprint for detailed HHT management, but are suitable for all clinicians to be aware of and implement.In summary, these 5 Outcome Measures provide metrics to identify healthcare providers of good care, and encourage care improvement by all healthcare providers.Electronic supplementary materialThe online version of this article (10.1186/s13023-018-0850-2) contains supplementary material, which is available to authorized users.