Terms of Use

Glut1 Community Connect

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The Glut1 Deficiency Foundation (G1DF) is a nonprofit patient advocacy organization dedicated to improving lives in the Glut1 Deficiency community through our mission of awareness, education, advocacy, and research.

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The G1DF honors the fundamental value, dignity, and diverse life experiences of all individuals. We recognize the right of every person to be mutually respected and accepted regardless of any differences. We strive to be inclusive, fair, and kind as we work to best serve every member of our community.

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purpose of Glut1 Community Connect:

The G1DF has created Glut1 Community Connect to be a safe, private, and secure place for families to come together to ask and answer questions, share experiences and ideas, give and get support and encouragement, and to celebrate milestones and accomplishments together. It is the only online group managed, moderated, and screened by the G1DF, and group members must first join the G1DF Family Network.

guidelines for Glut1 Community Connect:

The G1DF aims to create a respectful, inclusive, and authentic culture of support. In order to do that, we have the following guidelines:

rely:

The Glut1 Deficiency community is like a family and has a wealth of information and expertise. Rely on one another for support, encouragement, understanding, and wisdom. Please keep in mind there are many unknowns still about this rare disease and no one has all the answers. We will learn from each other and help teach others what we learn.

respect:

 We respectfully ask you to remember that every person and every individual situation is unique, and what is right for you and your family might not be for another. We expect everyone to extend compassion, inclusiveness, and acceptance to each other, not judgment.

Please use thoughtful and respectful language, keeping in mind word choice, context, nuance, tact, and sensitivity. Be supportive and encouraging to each other to help create an inclusive, kind community.

We also encourage you to keep in mind that communities and relationships are give and take. Feel free to ask questions and reach out for support, but don’t forget to give back in return when someone is in need and you have something to offer.

refrain:

We also want everyone to remember that the purpose of this forum is for sharing experiences, feelings, and information as a means of support:

Please refrain from offering any type of medical advice.  The approach should be “this is what we do” instead of “this is what you should do”.

As a peer support network, it is appropriate to share personal experiences and individual approaches to care, but it is out of our scope and expertise to attempt to diagnose conditions or recommend treatments for others. Please direct these questions or concerns to your medical team.

Please refrain from posting or sharing any false or misleading information. When discussing medical concerns, share personal anecdotal experiences, but please ensure that general statements are based on accurate, proven data from current medical research.

Please refrain from using the group for self-promotion. Members of this group all face significant medical costs, so please do not use the group to promote personal fundraisers or businesses or solicit donations for individuals or organizations other than the Glut1 Deficiency Foundation.

Please refrain from sharing clinical trial experiences. To avoid bias in clinical trials that may influence the outcomes, please do not share any information about side effects, benefits, or symptoms associated with an experimental treatment in an active clinical trial.

Please refrain from sharing any identifying personal information. This is a closed group. However, conversations are open to all members. Please be sure to familiarize yourself with general online privacy tips to understand your risks when posting personal information online and to Facebook groups, and do not share addresses, dates of birth, social security numbers, credit card numbers, etc.

Refrain from participating in any type of bullying. Differences of opinion are to be expected and help create a rich, diverse environment, but differences and disagreements should be handled in a respectful manner according to the guidelines. Any form of bullying, intimidation, shaming, or attacks will not be tolerated. Conversations that turn into arguments will be removed.

administration of Glut1 Community Connect:

Glut1 Community Connect is administered and moderated by staff, board members, and trained volunteers for the G1DF.

Administrators will monitor the Glut1 Community Connect group activity to help ensure guidelines are followed so that this remains a safe, supportive forum. However, administrators are not online 24/7 and have other responsibilities outside of the forum, so we will rely on fellow group members to help protect the culture we are striving to create.

If any group member has concerns about posts or comments made by another member, we encourage you to use the report function to report posts that need moderation. The administrators take all such reports seriously.

If the administrators determine that a post, comment, or thread lacks courtesy and respect or violates one or more of the guidelines and policies above, they may elect to remove the post, comment, or thread from the group. If a group member continues to post messages or comments that violate the guidelines and policies above, administrators may, at their sole discretion, remove the group member from the group.

maximize your experience:

There are several tools in Facebook to help you get the most out of your group experiences:

  • Follow posts by turning on notifications.
  • Search past posts for what has already been shared on a particular topic.
  • Use the files section to share helpful information.
  • Use the flag/report features to help alert admins about posts or comments that violate our guidelines.

requirements for joining Glut1 Community Connect:

You must be a member of the G1DF Family Network to participate in our support groups. This screening process will help ensure that we keep this a safe, protected, and private environment.

Once you join the Family Network, you will need to request to join Glut1 Community Connect.

A group admin will then work to confirm your identity, your membership in the Family Network, and admit you into the group. If you do not receive notification of your approval in 5 business days please email the G1DF at [email protected].

Our administrators may ask for additional identifying information in order to verify that you are a real person. Requests that cannot be verified will be deleted.

In order to join Glut1 Community Connect and to allow all of our members to feel they are part of an authentic community, the G1DF requires that participants use a Facebook account that does not conceal their true identity. Facebook accounts that do not meet the guidelines below will not be permitted to join the group:

  • The name on your profile should be some version of the same name that you use in everyday life so others understand who you are.
  • Pseudonyms, aliases, or assumed names are not permitted.
  • Nicknames can be used as a first or middle name if they’re a variation of your authentic name (like Bob instead of Robert).
  • You may not pretend to be anything or anyone other than yourself.
  • Your account name may not contain offensive or suggestive words of any kind.

The intent of this policy is to protect the group from imposters. If at any time the administrators become aware that a particular group member has falsified his or her identity, they will be removed from the group.

If you believe that a member has been approved that does not appear legitimate, please message one of the moderators or send an email to [email protected] with your concern.

If there is an occasion that you'd like to ask a question in the group but don't feel comfortable out of privacy concerns, you can contact one of the group admins and request that the question be posted for you in this way:  "A group member wants to know..."

privacy commitments:

The G1DF has implemented requirements for joining the group and a screening process through the Family Network to help ensure this is a private, closed group and a safe, protected space for the community to share feelings and experiences.

The G1DF will keep your Family Network information and your personal Glut1 Community Connect activities private and will not share.

Glut1 Community Connect is a closed, private group, which means posts can only be viewed on Facebook by other group members. However, the G1DF cannot prevent other group members from sharing any information that you post.

Additionally, we reserve the right to cooperate with local, state and national authorities in investigations of improper or unlawful activities, and this may require the disclosure of your posts, comments or any other personal information that you have shared with the group. We may also report to Facebook or other organizations about improper or unlawful user activities.

Please be sure to familiarize yourself with general online privacy tips to understand your risks when posting personal information online and to Facebook groups.

limitation on liabilities:

Glut1 Community Connect does not provide medical advice, and at no time should you rely on any information provided in the group in lieu of seeking medical care from your physician or medical team.

Statements made by members of Glut1 Community Connect do not reflect the views or opinions of the G1DF or any of its officers or directors, and the G1DF is not responsible for the thoughts, feelings, or statements of members.

 

steps to join:

To join the group please follow these steps:

  1. Enroll in the G1DF Family Network
  2. Request to join Glut1 Community Connect through Facebook.
  3. Answer membership questions:
    * Are you a patient or parent/caregiver of someone with a confirmed or suspected Glut1 Deficiency diagnosis?
    * Have you joined the G1DF Family Network? REQUIRED
    * The name you used to join the G1DF Family Network may be slightly different than the one you use on your Facebook profile. Please provide your given name below AND provide your email address:
  4. Agree to group rules.

If you have followed the steps required and do not receive approval within 5 business days or have questions, please reach out to: [email protected]. Your request will be deleted after 30 days if no action is taken.

To learn more about the Glut1 Deficiency Foundation, our programs, and the research we fund, please visit our website: www.G1DFoundation.org

group rules:

Integrity:
Be respectful and sensitive to others and their different life journeys. Share your feelings and experiences, but refrain from giving medical advice.

Kindness:
Accept one another without making judgments. Have a positive attitude and be supportive and encouraging to each other. Refrain from using offensive language and do not bully or intimidate other members.

Privacy:
Being part of this group is a privilege that requires mutual trust. Authentic, expressive discussions help make support networks more valuable to members, but information shared may also be sensitive and private. What's shared in the group should stay in the group.

Transparency:
All group members agree to the G1DF Glut1 Community Connect Terms of Use above.

Purpose:
The purpose of this group is to create a community of support, encouragement, and information to help make this journey easier. Self-promotion, spam and irrelevant links aren't allowed.