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

**If you are experiencing a true medical emergency, please call 911 or go to your nearest Emergency Room**

DINET was created in 2003 because of a lack of available resources and awareness.  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.

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 work offer our members a safe & secure environment for open communication and support.   Please take a few minutes to familiarize yourself with our guidelines before joining in discussions. Thank you!


Terms of Service

Please take a few minutes to familiarize yourself with our guidelines before joining in discussions. 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 forums are supportive and informational resources for dysautonomia patients and caregivers. Please be advised that posts on the DINET forums 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 term "Dr.", "RN" or other medical professional title or designation in their user name. Members may not manually sign 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

You agree to respect copyright law and refrain from illegally posting copyrighted material on this forum.  All information on DINET's forums and website is copyrighted.  Any information that you do not wish to be treated as Information should not be submitted to DINET's 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 deemed appropriate 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. If you choose to elaborate on a negative encounter, You may do so as long you don’t specifically name a particular doctor or hospital.  

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 discredit a physician’s diagnosis, including advising on medications and treatment plan. It’s okay to share personal experiences and/or opinions on what has or has not helped you throughout your medical journey.

Participation on DINET's forums signifies that to abstain from asking for medical advice.

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 advertisement.  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.  Links to commercial websites or any other forms of promotional material is not allowed and will be removed. However, you are free to share your experiences with products, websites, organization and events without trying to influence other members or linking to sites that encourage sales. Links to manufacturers or product pages are allowed for informational purposes. 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.



If you have any questions, DINET's administration can always be reached at dinetandforuminfo@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: MomtoGiuliana & SarahA33)  (Forum Ambassadors: Clb75 )

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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