The B Hub Community Agreements

How to Get the Most Out of The B Hub

Be supportive. Encourage and support your fellow members. No one here is looking for your criticism, cynicism, advice, or judgment. (We can get those things on the rest of the Internet).

Share generously. Your stories and experiences may be exactly what another member needs to hear today to solve a problem, seize an opportunity, or find comfort.

Be constructive. We’re here to help each other grow and lift each other up. Find ways to encourage each other think bigger, reframe challenges, and stay curious.

Don’t spam, promote, or troll.  This space exists to help you learn and build community. It’s not a place to spam, promote, or bully anyone else.

By joining The B Hub, you’re becoming a member of our vibrant B community, that is now more than ever connecting and growing both here in this new online space and out in the world. Thank you for being here.

Community Agreements

The Coalition for Hemophilia B, Inc., is dedicated to creating an inclusive and supportive online community for individuals affected by hemophilia B. Our mission revolves around enhancing the quality of life for people with hemophilia B and their families through education, empowerment, advocacy, and outreach.

CHB strives to foster a diverse, equitable, and inclusive experience for all online community members. Our team members have extensive experience in hemophilia B and actively engage with the community on a daily basis. These guidelines are established to outline the expectations for members of our online community. Should you have any questions, feel free to reach out to us at contact@hemob.org.

The terms and conditions contained in this agreement are legally binding and you agree to these by participation in the B HUB.

I. Definitions

For the purposes of these guidelines, the following terms apply:

  • Community Member: Any individual participating in the Coalition for Hemophilia B online community.

  • Community Event: Any virtual gathering, discussion, webinar, or other community-related activity facilitated by the Coalition for Hemophilia B.

  • Industry: Any corporation that provides goods and services to the Coalition for Hemophilia B community or our members on a for-profit basis. These corporations may include but are not limited to, specialty pharmacy and home care companies, pharmaceutical manufacturing, and marketing companies.

  • Industry Representative: A person who is employed by or otherwise compensated by Industry either on a full-time, part-time, or consultant/contract basis and attends events on behalf of Industry.

II. Community Members in Online Events

  • All community members must use identifiable usernames during community events and in the B Hub platform.

  • Community members must adhere to any additional guidelines or rules set by the Coalition for Hemophilia B for specific events.

  • The Coalition for Hemophilia B retains control over access to community events and may restrict or remove individuals who violate community guidelines.

III. Industry Representatives who are ALSO Community Members

An Industry Representative who is also a Community Member must leave all Industry related activities outside of this online space. Participation is restricted to your identity as a Community Member and not for use in connection with any commercial endeavors.

Said Community Member:

  • Will not use any information obtained as a result of attendance or participation for any purpose other than attendance or participation in such educational or other events and programs.

  • Must not conduct any marketing activity of any kind on this platform (marketing activity includes but is not limited to wearing company apparel, distributing or posting business contact information, giving out logo items, collecting patient info, distributing literature, talking about a particular company and their products and services, etc.)

  • Will not solicit names or addresses of participants, and must ensure that all personal information that may have been acquired via this platform is kept in confidence and will not be used for any Industry-related marketing, sales, or financial gain of any kind.

An Industry Representative, who is attending as a Community Member and is found in violation of the above, may be asked to leave this platform, the session, or event, and may be prohibited from participating in the future.

III. Age Policies and Restrictions

  • The Coalition for Hemophilia B defines minors as individuals under the age of 18. Community members must not solicit information or engage in any communication with minors without the explicit consent of a parent or guardian.

  • The B Education Hub is for persons 13 years old and older. Minors between the ages 13 to 18 will require parent or legal guardian consent to participate. No minor under 13 years old may have an account in The B Hub.

IV. Confidentiality Standards

All community members must adhere to confidentiality standards:

  • Information shared during community events or on the B Hub platform is considered confidential, this includes and is not limited to all profile information, texts, posts, images, and media. Submission of personal information is optional. 

  • The Coalition for Hemophilia B will not release participants' full names or confirm information without express written consent.

V. Violations, Suspension, & Removal

Violation of these standards may result in penalties, including account restrictions, additional review, or removal from the online community.

CHB staff, hosts, admins, and mentors within the B Education Hub will monitor all posts, comments, and chats for compliance with community guidelines and rules. All members are able to report violations for review by CHB and Hub Administrators.

CHB reserves the right to remove or disable any and all posts and persons.

Use of this CHB service for any purpose that is unlawful or prohibited by this agreement, including amendments and modifications is prohibited. 

Acknowledgment

The Coalition for Hemophilia B appreciates the ongoing support and commitment of our community members. Thank you for your cooperation.

Complete the question below to digitally sign, acknowledge, and agree to the above Community Privacy and Non Disclosure Agreement terms in full on behalf of yourself as a community member. 

Signing this agreement binds you to the rules and privacy provisions of the B Education Hub.