Legal
Common Plays LLC, operator of RarePause.
RarePause is operated by Common Plays LLC. This policy covers what the platform collects and who can see it.
Each member organization on RarePause decides what its community collects, who can see it, and who may join. For that information, meaning registrations, event activity, and what you write on its registration form, the organization is the controller and Common Plays is the processor. The organization answers questions about what is collected and who sees it, and we answer to them.
One account works across every community on the platform, so your account itself is not held for any single organization: your name, email address, password, profile photo, and affiliation belong to the account, not to a community. For those, we are the controller, and you should address requests about them to us.
We will not use information we already hold for a materially new purpose without telling you first, as described in section 16.
You can ask us for a copy of what we hold about you, ask us to correct it, or ask us to delete it. Write to help@rarepause.com. You do not need an account to make a request, and you do not need to have been a member.
Where the request concerns information an organization controls, we may need to route it to them, and we will tell you when we do. If they do not respond within thirty days of us passing it on, we will act on your request ourselves.
We aim to respond within thirty days. Common Plays is a very small company.
We do not sell or rent member information. We do not run advertising. We do not use anything you write to train AI models. We do not profile you for advertising, and we do not sell access to you.
We do not share one organization's members or content with another community on the platform, except where you have taken an action that involves both: booking a booth appointment (section 7), or joining an event two communities run together. We tell you at the time.
Some features use automated processing, and some of those need a provider outside our own systems: captioning or translating a session, for example. Where that happens, we name the provider in section 6, we send only what the feature needs, and the provider is contractually barred from keeping your information or using it to train anything. Where we suggest a connection between members, taking part is opt-in and we tell you what the suggestion is based on.
These are commitments, not current practice we might revise quietly. If any of them changes, we will say so in advance under section 16.
To create an account we need a name, an email address, and a password. You can add a profile photo and an affiliation.
To register for an event we collect what the organizing community asks on its registration form, which may include accessibility needs or your relationship to the condition.
While you use the platform we record what you do here: which sessions you attend and for how long, questions you submit and questions you upvote, reactions you send, votes you cast in polls, sessions you save, booth appointments you book, your notification preferences and the reminders we have sent you, problems you report about a stream, and your display theme. If you turn on push notifications we store the address your browser gives us for delivering them. From this, communities that use them compute points and badges.
Our hosting and database providers keep standard server logs, including your IP address and browser. We use them to keep the platform running and secure, not to build a profile of you: finding faults, stopping abuse. We do not run advertising analytics, and we do not use analytics products that follow you across other websites.
Profile photos and speaker photographs are stored in public storage. Anyone with the link can view them, whether or not they are signed in and whether or not they are a member of your community. An image you upload should be one you are content to have seen outside your community.
We use a small number of vendors to run the platform: cloud hosting and storage, a managed database, and transactional email among them. The current list is at rarepause.com/subprocessors. Each processes data only to provide that service to us, under contract, and none is permitted to use it for its own purposes. We hold an executed AWS business associate addendum covering the services that hold sensitive records. We are not a HIPAA covered entity or business associate, and that addendum is a precaution rather than an admission that HIPAA applies to us.
Three things do not fit that description.
Video. Session video is delivered by YouTube. When a session page loads, Google receives your IP address, your browser details, and the web address of the community you are visiting, which often names the condition. Google does this under its own terms, not as a vendor acting on our instructions.
Payments. Paid registrations go through Stripe, into the organizing community's own Stripe account, so that community sees the transaction in its own Stripe dashboard. We send Stripe the amount and identifiers for your registration, and in one checkout flow the event name. We do not send your name, your email address, or your card details, and we never see or store your card details.
Push notifications. If you turn them on, the reminder is delivered through the push service your browser uses: Google, Apple, or Mozilla. The contents are encrypted before they leave us, so the push service sees that a message was sent to your device but not what it says.
We do not use advertising networks, analytics products that track you across other websites, or data brokers. We update the subprocessor page before a new provider begins handling your information, and we notify organizations of material additions.
Some events have virtual booths run by exhibitors, who are separate organizations, sometimes companies with a commercial interest in the condition your community is about.
If you book an appointment at a booth, the people staffing it see that you booked and when, and they see your name. Whether they also see your email address is a setting the organizing community chooses for each booth, and you are not shown which way it is set. If you would rather they not have it, do not book, or ask the organizing community what it has chosen.
A booth meeting takes place in a video room run by a third-party service, using a link the organizing community enters. That room is not ours. We have no contract covering it and we cannot tell you whether it is recorded. Your camera and microphone are yours to leave off.
Booking a booth appointment is always your choice. Nothing reaches an exhibitor unless you book.
If someone registers a group, they enter details for the people they are registering: a first name, optionally a last name and an email address, and the answers to the community's registration questions about that person, which can include free-text questions where health detail may be written. If that was you, we hold all of that before you have ever visited RarePause.
Three things you should know about that.
The invitation we send names the event you were registered for. Event titles often name a condition, so if you would rather not receive that, the person registering can leave the email blank and pass the details on themselves.
If the person registering never completes payment, what they entered stays with us. After a day the incomplete registration is marked abandoned, but it is not deleted.
You can ask us to delete your details whether or not you ever create an account. Write to help@rarepause.com. You do not need to sign in.
Questions you submit appear to other attendees with your name, your profile photo, and any badges you have chosen to feature, once community staff approve them. If a question is shown on screen during the broadcast, your name may appear with it, and may therefore be in the recording.
Reactions you send appear on screen without your name on them, so no other attendee can tell who sent what. They are recorded against your account and included in the activity export described in section 10.
Poll results are shown to everyone in the session as totals. Individual votes are not shown to anyone.
Not everyone on a community's team sees the same things. Administrators of the organization can see its registrations, including the names and email addresses of everyone registered, and the answers given on its registration form, including the free-text answers described in section 11.
Administrators can also export what members did at the event. For each member, that export includes their name and email address, the reactions they sent, the questions they asked with timestamps, and their points and badges. Where a community issues discount codes, it can also export who received each one and whether it was used.
Moderators, the staff who review questions during a session, see less. They can act on what members post, but they cannot see member email addresses and cannot run these exports.
This is your community's own record of its own event, and it is not shared with other organizations on the platform. A very small number of Common Plays administrators hold access that reaches any organization's records; we use it to operate and support the platform.
Members of rare-disease communities often write about their own health: how long a diagnosis took, treatments that did or did not work, and what they are facing now. Everything you write is voluntary and self-authored, it is not a medical record, and we treat it as sensitive by default whether or not it is legally classified that way.
Free-text answers on a registration form are held under stricter access control than the rest of the platform, because that is where someone is most likely to write open-ended detail about their health. Today that means a separate system with its own controls. Any question a community explicitly marks sensitive is stored there too. That separation is about how we store it, not about who reads it: staff of the organization running the event see those answers alongside the rest of the registration.
Other things you write, such as a question you submit during a session, are stored in our main database alongside operational data, under the same access rules as everything else.
Common Plays is not a covered entity or a business associate under HIPAA, and RarePause is not a medical record system. HIPAA governs healthcare providers and their vendors, and a patient community writing about its own experiences does not fall under it. Nothing here should be read as a claim of HIPAA compliance.
If you speak at an event, the organizing community can create a speaker profile for you: a display name, a headline, a short biography, and a photograph. These are public from the moment they are created: visible to anyone, including people who are not signed in.
We do not collect a speaker's agreement to this inside the product. Communities are asked to obtain it before a speaker presents, but that happens between the speaker and the community, not here. If a profile about you is published and you want it changed or removed, write to help@rarepause.com and we will act on it.
Each organization decides how long its own session recordings stay available on RarePause, and can remove one at any time. That controls whether the recording appears here; the video file itself is hosted on YouTube and its removal is the organization's to make there.
Registration records are kept while the organization remains on the platform, because they are its membership records. When an organization leaves, its data is deleted after the notice period described in the Terms.
You can delete your account yourself, from your account settings. You do not have to write to us and wait for someone to act on it.
Deleting is not instant, and that is on purpose. When you confirm, we schedule the deletion and email you a link that cancels it. You have eight days to change your mind, from that link or from your account, and your account is deleted when they are up. If you would rather ask a person, you still can: write to help@rarepause.com.
Your health answers are the exception to that. Free-text registration answers, and any answer a community marked sensitive, are erased at the next hourly run. They are not held for the eight days, and canceling afterwards does not bring them back. If those answers are the only thing you want removed, there is a separate option that deletes them and leaves the rest of your account alone.
Answers you have entered but not yet paid for are kept for a limited time and then removed, whether or not you ask. While you are still filling a registration form in, what you have typed is saved as a draft so you can come back to it, and that draft is removed after seven days if you do not continue. When you go on to payment, we keep a copy of your answers for up to ninety days while the payment is processed, and remove that copy once the registration is complete or the ninety days are up, whichever comes first. Registrations that were never paid for do not keep their answers, and the answers left behind by unpaid registrations from before we worked this way are being removed as well.
Some things survive deletion, and you should know which. A registration record may be retained in reduced form, because it is the organizing community's record that an event took place and who attended. A record of what you paid is kept without your name or contact details, because we are required to keep it. Questions or comments you posted during a recorded session may remain in that recording, because it is a single continuous file we cannot edit you out of; tell us and we will ask the organization to remove or trim it.
Backups are the other thing deletion does not reach immediately. They are separate copies kept so we can recover from a failure, and a deletion works through them only as older copies age out and are replaced. We do not restore a backup in order to bring back something you asked us to delete. For the main database we keep about a week of daily backups, so a copy taken before your deletion can persist for roughly that long after it. The system that holds health answers has a longer recovery window, thirty-five days from the moment those answers are erased.
When someone running an event looks up whether an email address belongs to a member, we log that lookup so the access is auditable. Those log entries are deleted automatically after thirty days.
Traffic is encrypted in transit and data is encrypted at rest. Each community's data is kept apart at the database level, enforced by the database itself rather than by our application code remembering to check. A small number of internal jobs, such as producing an export, run with broader access. Access to production systems is limited to people who need it, which today is a very short list. We take backups.
What we do not have: no SOC 2 report, no HITRUST certification, no ISO 27001 certification, and no completed third-party penetration test. We have not carried out a documented restore drill of our backups. If you need any of those to sign, we do not have them yet and will tell you so directly.
If something goes wrong with member data, we will tell the affected organizations without unreasonable delay, and members directly where the law requires it or where we judge you would want to know. Security concerns go to help@rarepause.com.
Rare-disease communities include children and their families, and we do not want to shut them out. Minors may take part in RarePause communities.
RarePause accounts are for people aged 13 and over. We do not currently ask for age at sign-up, so this is a rule we state rather than one we enforce, and we are building the check.
A child under 13 can take part through a parent or guardian: the adult holds an account, registers for the event, and adds the child as a named attendee. For that child we hold the first name, and any last name and email address the adult provides, together with the answers the adult gives to the community's registration questions about them.
If the adult provides an email address for the child, we email that address an invitation to claim a place, and claiming one means creating an account. An adult who does not want a child to have their own account should leave the email blank. We are changing this so it does not depend on remembering.
We are building an account for children under 13 that a parent or guardian creates and controls. We will update this section before it is available, not after.
If we change this policy in a way that affects what we collect or who touches it, we will notify affected organizations and post the change here with a new date before it takes effect. Previous versions stay available so you can see what changed.
Two kinds of statement appear in this policy, and they change differently. The commitments in section 3 are promises, and we change those only with advance notice, as described above. Where we instead describe how something works today, that is a description of the product as it stands, and it changes as the product does. We update this page when it happens.
Questions, requests, and corrections go to help@rarepause.com, which reaches a person.