Phenylketonuria lands on Mastodon

Have you heard of Mastodon? Most likely. It’s a small social network that has grown a lot in recent months because a lot of users disappointed with the turn of events on Twitter have migrated to it. Others followed out of curiosity (just like me).

Being a Mastodon user myself since November 2022, I find that while it’s very similar to Twitter, it’s also very different.

In what way? Instead of having a single structure like Twitter where you register and thus have access to the entire network, Mastodon is “federated”, i.e. it’s split into thousands of servers (also called instances). We must therefore choose 1 server where to settle and it becomes a bit like “our Twitter”, our home.

When we choose our server, we have access to our “neighbors” who have also chosen this place (the “local” or “community” feed) to settle, but also to the set of people they follow (the “federated” thread).

What I love about Mastodon (and it’s also why I spend a lot more time there than on Twitter these days) is that the overall atmosphere is much healthier, relaxed and respectful!

Why am I telling you all of this

I am pleased to announce that a colleague has just launched his own Mastodon instance dedicated to phenylketonuria! This is our own “island” where it will be possible to discuss various topics related to phenylketonuria (or not).

We are therefore happy to invite the entire PCU community (organisms, patients, parents, friends) to join the Mastodon server. You can also follow me by clicking here:

Note that you do not have to register with the server to be able to chat with me or other users of this dedicated phenylketonuria server, but you will not have access to the “local” thread.

I hope you will join us in large numbers!

But what if I already have a Mastodon account on another server?

This is not a problem! You have two options:

  • You can simply create a new account by clicking on You will therefore have two accounts (your original account and the new one dedicated to phenylketonuria).
  • You can migrate your original account to server by forwarding all your followers! The procedure is simple, take a look at this video.

BONUS: The two best mobile apps, in my opinion

Nothing beats a good mobile app for easily navigating a social network. 🙂

  • Ivory: BY FAR the best of all the applications I have tested. I highly recommend it, but you have to pay for it.
  • Metatext: The second best, mainly for its simplicity (and the fact that it is free).

Don’t hesitate to let me know if you are interested in the comments or ask me questions.

You want to do your own research about Mastodon? Here’s a great guide to start.

I invite you to follow me on FacebookTwitter and Instagram.

Do you enjoy my content? Please, contribute to the development of Phenylcetonurie | Le blogue by making a small donation.

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