How to create a profile for a rare disease community on RareConnect

See our list of current communities on RareConnect here:

We work in partnership with rare disease patient associations to create those communities and offer community management support, human translation and real ownership of the site to patient associations that partner with RareConnect and EURORDIS. To get started asking questions and sharing your experiences in a rare disease community on RareConnect, you first need to register and set up your Profile.

When you click SIGN UP, your are delivered to your Profile setup page. You have the ability to Edit or Update your Profile at any time.  Here is more information to keep in mind when setting up your Profile after registration.

Profile Photo

While a photo of the member is preferred, there are other options, e.g, country flag, picture of a pet or favourite animal, or a large and colourful icon. You have the option to change your Profile Photo at anytime. Please consider replacing the blank silhouette the platform assigns you.



Default Language

Select the language that you want to experience RareConnect in. You’ll see all the content automatically translate into the language you choose.
– English
– French
– German
– Italian
– Spanish
– Portuguese
– Serbo-Croatian
– Russian

Your website or blog

If you have a blog or collaborate writting articles in a website you should enter the URL here so it will be visible on your profile. It’s a great way for others to get to know you better.



Remember that adding this information to your profile will allow us to create a map of people living with the rare disease that interests you and many others. It will facilitate other patients and groups to find and better connect with you so that our communities can feel closer than ever.

For members in the U.S., please include city, state, USA. The county is not required. Plano, TX, USA

For members outside the U.S., please provide city, county/region, country: Kent, England, UK




A little about you

Enter some basic information:
– What you are looking for from the community
– Onset date (mm/yyyy)
– Onset age
– Diagnosis date (mm/yyyy)
– Type or subtype
– Current status

Your profile visibility – very important

Visible to users – all RareConnect members can see your Profile. What you write there is not available to search engines. This is the default option.

Visible to everyone – non members of the community and search engines can see what you write when you select this setting. We don’t recommend it.



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