Social media are websites and applications that allow users to create and share content. Almost unimaginable until 20-30 years ago, they are now ubiquitous. Although some rarely use them, there are very few young people without daily access to social media. There are many apps in use around the world, the most popular being Facebook, YouTube and WhatsApp, each with a slightly different main purpose.

Many academic organizations have a social media presence and are especially active on Twitter.

In academia, institutions encourage their staff to actively participate on social media as they see it as a convenient way to disseminate information about their research and other activities to the general public.

There are many daily tweets related to haemophilia but this field, in general, unlike cardiology or rheumatology, is relatively underrepresented.

It is important for users to identify and follow people and organisations they trust; they need to be mindful of the fact that anyone can say almost anything on social media and the information may not be true.

In this regard, nearly all professional bodies, patient groups, and journals have a presence on Twitter, and examples include the World Federation of Hemophilia (@WFHemophilia), the European Association for Haemophilia and Allied Disorders (@EAHADnews), the European Hemophilia Consortium (@EHC_Haemophilia), and the National Hemophilia Foundation (@NHF_Hemophilia).



  • Mike Makris, Twitter and Haemophilia, Haemophilia. 2020;26:181–182, DOI: 10.1111/hae.13931
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Learn more about the meaning of the words you read on this page and learn about the entire glossary on hemophilia.

Active involvement of the patient in the management of his/her health programme.

A ereditary genetic illness, characterised by a deficiency of clotting factor VIII, that exposes the individual to a greater risk of both internal and external bleeds.

Haemophilia A is more common in males, whereas females tend to be healthy carriers of the condition.

The typical symptoms of the condition include haemarthroses (joint bleeds) and haematomas (muscle bleeds).

Condition that occurs when factor VIII activity is between 1% and 5%.

Condition that occurs when factor VIII activity is between 1% and 5%.

Condition that occurs when factor VIII activity is <1%.