In the previous issue of ELA info magazine, you discovered how to register to LEUCONNECT and participate in the e-cohort of patients. As a member of LEUCONNECT e-cohort, you can now communicate with other families concerned by leukodystrophies. With them, you are a community.
In this issue, you will learn how to communicate with LEUCONNECT.
In addition to creating an e-cohort of patients and facilitating access to clinical studies initiated on the platform by health professionals, LEUCONNECT offers a secure messaging feature.
It will allow all members of the e-cohort to exchange with each other anonymously in conditions guaranteeing the security and confidentiality of their exchanges, in accordance with the legislative recommendations in force.
It meets the expectations and request of families to be able to discuss common issues abour the disease. Anonymity offers the opportunity to exchange confidentially, without fear of the judgment or look of the other.
As members of LEUCONNECT e-cohort, you are invited to give your consent to use the secure messaging system, and to fill in your messaging "Public Profile" that will allow you to interact with other members of the e-cohort who also have a public profile, while remaining anonymous.
1. I create my public profile
In your personal account, on your desktop, select the "Profile" feature, by clicking on your name (top right corner of the screen). Then select "My Account" and access your "Public Profile" for the messaging system.
To create your "public profile", you must choose a pseudonym and an avatar from those offered by the system, then write an introductory message that will be seen by other users of the system, and exclusively by them. This information does not exit LEUCONNECT. It is public for the LEUCONNECT community, but not visible to other users who are not members of LEUCONNECT e-cohort.
So each user, you like the others, will have a profile both anonymous because only your pseudonym will be visible (your name and surname will not be accessible), and public in the community of LEUCONNECT because visible to all members of the community and only by them.
At any time you can choose to no longer be visible from the community by simply disabling the publication of your public profile.
2. I manage my contacts.
Once the public profile is published, you can find interlocutors in LEUCONNECT community.
On the top of the screen, in the banner, you can access the management of your contacts by clicking on the icon symbolizing a character.
There, three tabs are available: "My contacts" - "New contacts" - "Black list".
The tab "My Contacts" contains the list of the contacts you are linked with. The "New Contacts" feature allows you to search for another user in LEUCONNECT community, and send him a contact request. The tab "Blacklist" allows you to isolate certain contacts from your list, permanently or temporarily, and to no longer receive their messages.
To access the list of available contacts, simply click on the small magnifying glass accessible in the "New contacts" tab. This list can be sorted according to "pseudonyms", "age", or "sex", in order to refine your search for new contact.
At the end of each line, and appear.
Press for "information". It shows the short public introduction published by the contact.
Press to ask this contact to connect with you. By selecting it, a connection request is sent to the person, who receives a notification in his LEUCONNECT private account, and an email inviting him to log on his account.
When you receive a contact request, you are free to accept or reject it from your "Contact Management" area. Once the connection is accepted, the new contact is part of your contact directory in your tab "My contacts" and you are part of his.
When you receive a contact request, you are free to accept or reject it from in the "Contact Management" part. Once the connection is accepted, the new contact is part of your contact list in your tab "My contacts" and you are part of his.
3. I exchange in full confidentiality
You can now select one of your contacts and start a discussion with him. Via the messaging system, the discussion can include two or three people maximum. You find sent messages in your "Sent messages" tab, and you can answer a messages following reception in your "Inbox". Thus the discussion is carried on between contacts engaged in the same conversation. You can delete messages at any time by placing them in the trash, or isolate a contact that you no longer want to associate with the conversation. This contact will no longer receive new messages from the conversation, but will have access to the exchange history in which he participated.
With LEUCONNECT, you become an actor of research by enrolling in the virtual e-cohort of patients, but you also help to break isolation of some families, sharing your knowledge of the disease, and life experiences with the disease.
Do not wait any longer to register on the platform and benefit from all these features. LEUCONNECT is with you!