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 JOIN NOW, 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.

– Privacy Status – very important

Friends – only people who accept your friend requests, or members whose friend requests you accept can see your Profile. What you write there is not available to search engines.

Members – all members who have joined that community can see your Profile. What you write there is not available to search engines.

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

– First and Last Name

Enter your name the way you want your “friends” to see it. If you set your “Privacy” for members, only members will see your first name. if you set your privacy for “Public, then everyone will see your real name. Don’t put your full name if you are not comfortable with any member of the public knowing it.

– Username

It is all about the privacy setting. The username is more of an alias. You can limit access to your username to members. Enter your username the way you want the public to see it. For example, a member whose real name is Justin Trudeau might choose the alias Justin123 or Canadian123 instead of using his real name as a username.

– Email

There are three observations that should know about how emails work on

– Only friends can send private messages to each other by going to another member’s profile and clicking the Add Friend icon. Messages from friends go to the email address you registered with on RareConnect. You must be friends before you can send a private message. Only moderators can email any member without being friends first.

– When you send and receive emails, neither the sender nor the receiver can see each other’s email addresses. All you will see is

– If you have a question about your email settings, please write to us at:


Your birth date is not a required field. Nonetheless, is you enter your date of birth, it is considered CONFIDENTIAL and not available to friends, members or the public.


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

Default Language

Select the language that you want to experience RareConnect in. You can ask for a human translation across any of these languages.
– English
– French
– German
– Italian
– Spanish
– Portuguese

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.


Join a Community

As of April 5, 2016, RareConnect supports 83 rare disease communities. Select the community from the drop down menu. If you are joining the Discussion Groups, leave this section blank.


This information is private. Enter your relationship to the disease.

Introduce Yourself

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

Introduce yourself in your profile

Privacy Status

Don’t forget to limit access to your Profile to other Members of your community.

privacy settings

Please see our Privacy Checklist to ensure you are only sharing what you want to share.

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