We have recommended a few platforms to start with because they have private messaging capabilities, moderation, adjustable privacy settings, and ways to post or share images or other media. Other platforms are also available to use to connect with people. Some are better than others for this purpose. As always, it is important to consider privacy and security when posting personal information online.
Please notify us when you have created a variant-specific platform so that we can add it to the index. Alternatively, you can add it to the current index by clicking the "+" button in the upper right hand corner and filling out as much information as you can. Please provide a direct link to your variant-specific platform.
Recommended Platforms: Forums and Chat Platforms
- American Cancer Society Cancer Survivors Network Forum: This forum has discussion boards sorted by specific cancer type. You can create an account with an alias, then add or find a forum discussion thread about your variant in the cancer-specific discussion board of your choice. You can also start a personal blog on the site if you wish. The Cancer Survivors Network site also has a live chatroom for you to connect with other cancer survivors and ways to send private messages to other forum users.
- FORCE - Share Your Mutation Forum: FORCE is a breast and ovarian cancer advocacy group with a "Share Your Mutation" forum in which you can register with an alias, then add or find a forum discussion thread to discuss your variant with others. This forum is similar to the American Cancer Society Cancer Cancer Survivors Survivors Network forum in many ways.
- Google groups: In order to create a Google group, you must sign into Google groups with an email address. This can be a Google or Gmail email, or a different email address. You can then create a forum with the Google group by selecting "web forum" as the Group type. If you are an administrator, you can add people to the group directly by adding each person’s email address, or people can request to join and you can approve or deny their request. You can also send an invitation to people to join the group if you have their email address. You can make this group and its posts searchable within the Google groups directory or set it to private. It is easy to upload photos and attach other files onto a Google groups post.
- Flock: Flock is a collaboration platform that allows people in a single "Flock" group to create multiple discussion threads by "starting a chat." You can invite other people to join your Flock group if you have their email address, or other people can request to join the group if they find the url in our index. Flock also allows you to connect with others by internet voice calls, video chat, or private messaging (a chat just between you and another Flock group member). You can upload many different files to Flock, and you can link to files that you may keep in your Google drive account. Flock is available as a mobile app.
Other Platforms: Forums
- Smartpatients.com forums: This is a patient community website where you can ask for permission to join message boards categorized by disease type. This site can be helpful in connecting with other patients who have the same type of cancer as you. Once you are approved to join a specific message board, you can create a post about your variant. You must request access to private messaging before being able to send messages directly to other users. It can be hard for new people to find these forum threads.
- Facebook group: You must have an individual Facebook account to create a Facebook group. You can post personal information on your individual Facebook account, or you can choose to leave most of the fields blank. After you create your individual account, you can create a private, or "closed" Facebook group about your specific variant. Other people can request to join your group, and you can approve or deny the request; you can also invite other people to join the group, or add them to the group directly, if they are your Facebook "friends." Facebook has a built-in structure for creating posts, comments, and emoji "reactions." It is easy to upload images, videos, and other files on Facebook if you would like to share information about your family history or your variant. Facebook also allows private messaging between users. In general, people use their real names on Facebook to connect with others. Facebook is available as a mobile app.
- Reddit subforum: Reddit is a social website with a built-in open-source forum structure. There are "reddits," or discussion boards, like r/ClinicalGenetics and r/Genetics, where you can create new threads under an alias about your specific variant. You can also create a "subreddit" about your specific genetic variant, but you must have a reddit account that is at least 30 days old and have a certain, undefined number of "positive" votes from your previous postings. Reddit posts are not listed chronologically, but are instead sorted by highest to lowest number of "positive" votes or upvotes. Reddit is available as a mobile app.
Other Platforms: Chat Platforms
- Slack: Slack is very similar to Flock. It is possible to join a Slack forum once you have a specific link to the forum. Users can also be manually added by email to a Slack forum (or "workspace") and to specific threads within the workspace (called "channels"). Slack allows sharing of images and files up to a certain memory limit. Slack is available as a mobile app.
- Discord: Discord is a chat platform primarily used by online gamers. It allows video and audio chat capabilities, and it can be accessed easily as long as you have a direct link. You can create a Discord server about your specific variant and send others email invitations with the direct link to join. You can also post a direct link to your Discord server online. Private messaging is available. Discord is available as a mobile app.
Other Platforms: Blogs
- Dreamwidth: Dreamwidth is a journaling site with a built-in forum structure in the comments of each journal entry. After you create a Dreamwidth account with an alias, you can fill in a profile with specific "interests" and post in your own online journal. You can also create a community journal about your variant, and other users with Dreamwidth accounts can ask for permission to join your community and post information on the community. Private messaging and a limited amount of image uploads are available for this site.