It certainly wouldn’t have escaped your notice… We have decided not use on the social medium platform ‘X’, formerly ‘Twitter’ anymore. In practice, we have stopped posting new tweets and responding to others. The existing tweets will remain accessible for information purposes.
Moreover, in the news items on our website, the button to share the news item on X is removed.
Parents and caregiver, researchers, students and other interested parties can continue to follow us on Facebook, LinkedIn and Instagram or subscribe to our newsletter. In addition, we are working on expanding our presence on Bluesky and Mastodon.
Bohring-Opitz.org was as independent medium and platform of the Bohring-Opitz community active on X/twitter about 10 years. In this time we build up a community of 375 followers and with this account we shared almost 400 posts.
This decision, and the decreased relevance of X, is in line with our strategy to focus on other communication channels that better suit the Bohring-Opitz Syndrome community and interested target group.
Thank you for continuing to follow us and staying connected.
Bohring-Opitz Syndrome/ASXL1 