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Welcome to the Dysautonomia Information Network's (DINET) Website & Forum

The first section of this document is related to forum usage.  For information related to privacy and personal data collection & usage, please visit our Privacy Policy at https://www.dinet.org/privacy 

DINET was created in 2003 to counter the lack of available resources for patients living with dysautonomia, and to create a greater awareness about this disorder.  We are the oldest dysautonomia non-profit and patient forum & support network in the world. Today,  DINET is still dedicated to providing international support and offering resources to thousands of patients and caregivers living with dysautonomia.

Please note:  The following guidelines also apply to posting and sharing on DINET's site, Facebook page or any other online community belonging to DINET 

The forum guidelines are not arbitrary and are in place to ensure the DINET forums remain a valuable resource for members.  By providing a moderated forum we offer our members a safe & secure environment for open communication and support.  

The Dysautonomia Information Network - DINET, is not responsible for the member content on this forum and we do not vouch for the accuracy, completeness or usefulness of any of the content posted. The posts reflect the views and opinions of the writer of the message and not the views or opinions of DINET. Please review this document in its entirety regarding the content allowed, the guidelines about posting and what to do if you find any information to be in violation of these guidelines. Thank you!  

Terms of Service

DINET may revise and update these Terms of Services at any time. If you choose not to follow the rules agreed upon at registration and before posting, the result is a disabling of your account. Your continued usage of DINET's forums indicates you accept all changes and agree to the following:

Purpose & Content

DINET's site and forums are supportive and informational resources for dysautonomia patients and caregivers. Please be advised that posts are visible to the public. We encourage our members to be cautious in posting personal information, including first and last names, e-mail addresses, etc.  Please keep all discussions PG-rated.

Account Information

You agree to have no more than one username on the forum. Members may not use the terms "Dr.", "RN" or other medical professional title or designation in their username. Members may not use "DINET" as part of their username or any name similar to the name of the Dysautonomia Information Network organization or any name suggesting an association with DINET. It is understood that DINET reserves the right of final approval on all usernames and may request members to change their username if it does not reflect the tone of the forum and/or organization.

Members may not include in their signature or manually sign their posts with a professional title, such as "Dr." or "RN", that informs or implies that they are a medical professional. 

Legal Issues

You agree that DINET and/or its volunteers will not be held liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this forum.  The content appearing on our website is for general information purposes only. When you submit a question or make a comment on our site or in our dysautonomia discussion forum, you clearly imply that you are interested in receiving answers, opinions, and responses from other people

All information on DINET's forums and the website is copyrighted. You agree to respect copyright law and refrain from illegally posting copyrighted material on this forum.  Please contact DINET if you are interested in reprinting anything from the Dysautonomia Information Network website or forums.

As a matter of site liability, you agree not to make public statements that express a wish to harm yourself or others. We care about your safety and urge you to seek professional help if you or someone you know is experiencing thoughts of harm or serious depression. International Hotlines (including the United States) can be found here: http://www.suicide.org/international-suicide-hotlines.html

Moving, Editing and Deleting Posts

You agree that DINET's moderating team may move, edit and delete posts, without notice, that do not comply with the forum guidelines, or for any reason are deemed inappropriate by the administration for the good of our community and its safety.

Doctors and Hospitals

You agree to refrain from making disparaging or defamatory remarks about hospitals or medical professionals on this forum. It is fine to make a statement describing your personal experience, such as "I had a negative experience with Dr. ___ _,"  however, you may not elaborate for the purpose of negatively impacting a doctor's name or practice.  The purpose of the forum is to share information that will be helpful to yourself and others. If you feel that recounting a negative experience with a healthcare provider may be useful to others in some way or may help you make a point, then you may elaborate as long as you don't specifically name a particular doctor, hospital or healthcare staff.    

Medical Advice

The content of DINET's forums is in no way a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with a physician. Please keep in mind that treatments that help one patient may be detrimental to another. Members should never try any new treatment without first obtaining a physician's approval.

Participation on DINET's forums signifies that you agree to abstain from giving medical advice to other members.  It is not okay to offer a medical diagnosis or to discredit a physician’s diagnosis.  It is also unacceptable to give advice on medications and treatment plans.  However, It is okay to share your personal experiences and/or opinions on what has or has not helped you throughout your medical journey.

While the DINET forum does provide a medium for mutual support, it is not meant to be a substitute for professional counseling. We care about you and your safety. If you need support beyond what the forum can provide, please seek help from a qualified professional.


Respect For Others

A tone of kindness is appreciated in all discussions and in any message sent using DINET's personal messaging system. You agree, through the use of DINET's services, not to post any content that infringes upon or violates any members rights. Please do not post information regarding anyone else's health without first obtaining that person's permission. DINET encourages you to use good judgment, but please do not be judgmental in posts.  

You agree to refrain from flame wars, debates and the discussion of "hot topics," which are likely to provoke debates. Common hot topics include, but are not limited to, politics, abortion, and religion. Asking for prayer and general religious comments are allowed, but please do not use this forum to promote your religious beliefs or comment on someone else’s.

DINET's forum has a built-in censor that removes profanity and replaces it with " ****".


Disagreements on the Forum:

Other Members:

You agree that if you have a disagreement with another forum member you shall not post about it publicly. You agree to handle it maturely within the Private Message feature.   

Administrators, Moderators or Rules:

You agree that if you disagree with DINET's forum rules or the actions of an administrator/moderator you will not publicly post about arguments or disagreements on this or any other forum. We encourage disagreements to be brought to an administrator/moderator through the Private Messaging Feature. You agree to abide by the final decision made by DINET for continued participation.

Advertisement, promotion, and solicitation

DINET does not allow advertisements.  Any and all attempts to solicit members to use a particular product, participate in a specific event, visit a business or organization or participate in a specific medical study will be removed.  Links to commercial websites or any other forms of promotional material is not allowed and will be removed as well. However, you are free to share your experiences with products, organizations, and events without trying to influence other members or linking to the organization's websites or providing links that encourage sales.  Links to informational articles are allowed.  If you are a researcher who would like to list your medical study, please contact DINET at webmaster@dinet.org

It is okay to say you are a member of another organization, website or forum. It is okay to say you use a certain business or product. It is okay to say that you participated in a particular fundraiser. However, it is not okay to use DINET's forum to recruit members for other organizations, websites or forums. It is not okay to use DINET's forum to promote businesses, products, or fundraisers.


For questions related to the DINET site, general information or the organization itself, please direct messages to the DINET Board of Directors and DINET Officers at webmaster@dinet.org or to the individuals on the About Us page.

For questions about the DINET forum, the forum administrators can be reached at dinetforums@dinet.org  If you have a question for a specific DINET moderator or administrator, please send your question to that individual instead of posting it on the forum.  Username’s for the forum staff: (Administrators/Moderators: MomtoGuiliana, Moderator: Pistol) 

The use of the forum is a privilege DINET provides to members. We strive to keep our forum a safe and enjoyable environment for all.   

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