Signing up with RareConnect

RareConnect offers individuals who are affected by a rare disease a worldwide platform for sharing experiences. Although you can find the collected stories on our website, it is worth registering with RareConnect to take advantage of the versatility of this platform. The registration is free, very simple and offers many possibilities, which we explain below:

Three ways to register at


If you use Facebook or have a Google Account, you can sign in to RareConnect with this access information. You can also register by going to the RareConnect site, entering your email address as your username and choosing a password. You can change your username while you're signing up.

If the following page is not displayed in English, you can change the language setting on the top right. Right next to it, in your profile, you can voluntarily enter further information about yourself.

Joining the Myotonic Dystrophy community


Type the string "Myoto" in the search box. The community is displayed. Click on it, you will be added to it as a member and you can now read, rate and comment on others' stories.

RareConnect offers you several ways to read articles. If a new article is available, you will be notified by e-mail. We will show you more on the next page.

Andreas Herzog & Erich Maurer,

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