Stay connected

As the BHD community is spread all over the globe, strengthening connections and developing more ways of meeting others is important. At the Third BHD Symposium, people at the Patient and Families session proposed the idea of privately messaging Forum users. Now the private messaging system is live and running. How does it work? Anyone who would like to receive messages has to be a Forum author (written at least one post on the Forum) and also has to opt in to the system by sending an email to To send a message, please log in to the Forum, find the Forum author you would like to contact and click on the ‘Send a personal message to this author’ link. This is an email service, but only usernames are visible. Neither the sender nor the recipient will see each other’s email address. All messages are moderated. We hope you will find this a useful way to make contact with BHD families around the world.

Another way of connecting to the BHD community is through Twitter. has now joined the company of those who tweet. Our tweets will focus on BHD news, new research and events. Twitter has become an efficient and interactive source of information; the Lancet for example has recently highlighted its potential for public health communication. Click here to follow BHDSyndrome today.

Finally, it is exciting that the number of participants in the BHD Worldwide map is increasing. It would be great, however, to see many more pins on the map!

Do stay connected! Remember to email if you would like to opt in to the Forum private messaging system. Be sure to follow us on Twitter. Consider putting yourself on BHD Worldwide. As always, please let us know if you have any comments or suggestions by emailing


  • Morris, K. (2011). Tweet, post, share—a new school of health communication. The Lancet Infectious Diseases, 11 (7), 500-501 DOI: 10.1016/S1473-3099(11)70159-1

3 thoughts on “Stay connected

  1. Pingback: BHD Research
  2. Hello
    I am 66 years old and have BHD
    I just found out about this site
    Glad to have information

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