Join in and share your stories: We encourage you to join the NDRF Community and join in the discussions featured on this Forum. If you are new to the site, please spend time viewing the discussions and then follow the link to register.
We would like to make certain that everyone understands the
community guidelines and ask that you read the following before joining the
Safety Comes First: Please remember that this is a public web site and can be viewed by anyone on the Internet. With the exception of our registration and the private profile pages, search engines are available to link directly to any pages within this site. Please follow these guidelines to help protect your privacy, and that of others:
- Do not share your address, phone number, details about your family, or
anything else you would feel uncomfortable sharing with strangers. Likewise,
do not provide this information about any of the members of the community.
- Please do not post anyone's email on the site. These addresses become the
target of spammers who gather publicly posted email addresses from web sites
- Do not post physician's names and contact details, or information
regarding their treatment protocols. NDRF maintains a list of physicians that
have requested their names to be made part of our referral network. If a
physician has made his or her information available on the NDRF Medical
Network page, you are free to duplicate that information here. If you know of
a medical provider that would like to be added to our network, please ask them
to contact NDRF for inclusion in this listing.
- Do not discuss anyone’s private medical information. This information is privileged and NDRF insists that you respect the privacy of all members. The fact that a member reveals information to you, or to any other member, does not authorize you to discuss that information on this website.
Respond with Care: If a post contains information you don't agree
with, or you take offense with, please take time to think about it before you
reply. The impersonal nature of Internet communication does not allow us to see
the person who posted. We miss out on the human elements that are part of face
to face discussions. As a result, it is easy for misunderstandings to occur. We
ask that you be sensitive to others’ feelings and ask for clarification using
the private message feature made available to all members. The public message
boards should not be used to lash out, to make hurtful comments, or slam others.
Please remember that the Forum is designed to be a supportive environment for
all who visit.
Medical Information: The Forum is not intended to be a place to find or dispense medical information or advice. Feel free to discuss the ways that you are personally managing your illness and discuss the ways you have learned to control your symptoms. Advising others to alter their medical treatments, stop or start medications, or interpreting medical tests and results must be avoided. These types of decisions should be made between an individual and their physician.
Recruitment of Members: NDRF does not allow the Forum to be used for recruitment of any type. Please do not use the site to request members to participate in any type of study, survey, and/or questionnaire. Medical researchers that wish to announce research studies should notify NDRF. All research studies are made available via the NDRF Research Protocol page.
Other Guidelines: To protect others who visit the site, we ask that you do not post links to other websites, conduct any type of advertisement or marketing, conduct fundraising campaigns, offer items for sale, or post any provocative information. If you wish to conduct any fundraising for NDRF, we ask that you contact the Foundation directly.
Search Function: To keep To keep our message boards easy to use, please use the search function to locate topics of interest before starting a new thread.
Posting Time Frame: NDRF does not provide any guarantee for the time your posts will remain active. Generally, posts will be available for a period of 3 months. Archived copies of posts may, at the discretion of NDRF, be made available for review after this period.
NDRF Monitoring: NDRF moderators periodically scan these message boards and will delete posts that violate these guidelines or are offensive in nature. We remind members that this site is open to visitors of all ages, and ask that you consider this when making posts.
Reporting Problems: You can assist the NDRF moderators by reporting inappropriate messages or pictures by emailing NDRF:
Questions or concerns? Please feel free to email NDRF with any questions or concerns.
Terms of Service:
Considering the real-time nature of this bulletin board, it is impossible for us to review messages or confirm the validity of information posted. Please remember that we at NDRF do not actively monitor the contents of, and are not responsible for, any messages posted. We do not vouch for or warrant the accuracy, completeness, or usefulness of any message, and are not responsible for the contents of any message. The messages express the views of the author of the message, not necessarily the views of NDRF, or any entity associated with NDRF. Any user who feels that a posted message is objectionable is encouraged to contact us immediately by email. We have the ability to remove objectionable messages and we will make every effort to do so, within a reasonable time frame, if we determine that removal is necessary. This is a manual process, however, so please realize that we may not be able to remove or edit particular messages immediately.
You agree, through your use of this service, that you will not use the NDRF Discussion Forum(s) to post any material which is knowingly false and/or defamatory, inaccurate, abusive, vulgar, hateful, harassing, obscene, profane, sexually oriented, threatening, invasive of a person's privacy, or otherwise violative of any law. You agree not to post any copyrighted material unless you, NDRF, or the NDRF Discussion Forum own the copyright. You also agree not to publicly discuss or reveal private information about another user of this forum, including contact information.
Although NDRF does not, and cannot, review the messages posted and is not responsible for the content of any of these messages, NDRF reserves the right to delete any message for any or no reason whatsoever. You remain solely responsible for the content of your messages, and you agree to indemnify and hold harmless NDRF and their agents with respect to any claim based upon transmission of your message(s).
By posting your story, questions, concerns and other information on the Community, you grant the National Dysautonomia Research Foundation, NDRF, or its authorized agent permission to publish, reproduce, record and use your this information as NDRF or the authorized agent sees fit in any medium or forum in a manner which helps to further the NDRF mission. You agree to release and hold harmless NDRF from any and all liability by any third party that may arise from the release of information to any third party or by any third party and agree that all text and other content made by you, for you or the person for whom you are the parent/guardian, shall be the exclusive property of NDRF. NDRF cannot verify every claim made by a third party contributor to our Community and is not responsible for the authenticity of information posted.