Privacy Policy

1) Privacy Policy

GBS/CIDP Foundation International is extremely concerned about protecting your privacy. The following will explain our policy on information gathering and storage.

What We Collect:
Any user who wishes to access restricted features on the GBS/CIDP Forums is asked to complete a registration form. During the registration process, the user is required to enter certain information, such as name, email address, mailing address and phone number. Other requested information, such as interests, birthday and occupation, is considered optional and entered at the user’s discretion.

How We Use It:
We use the information we collect to provide members with a more personalized website experience, to deliver requested features such as private messages and email alerts, to improve customer service and minimize security risks by eliminating the need for members to transmit sensitive contact data.

How We Store It:
GBS/CIDP Foundation takes every precaution to protect our member information both online and offline. When users request or submit sensitive information on our website, that information is encrypted during transport and is stored in that encrypted format while in use on the site. All member information is restricted to our offices and is never shared with third parties, resold or redistributed. Finally, the servers that we store our websites and member information on are kept in a secure, alarmed environment and monitored 24 hours a day, 7 days a week, 365 days a year.

Donor Privacy Policy:
The Foundation will not sell trade or share a donor’s personal information with anyone else, nor send donor mailings on behalf of other organizations and the Foundation will only share personal information once the donor has given the charity specific permission to do so.

Your Data:
You may contact us to request an export or deletion of your personal data.

2) Terms of Use

The Guillain-Barré Syndrome/Chronic Inflammatory Demyelinating Polyneuropathy Foundation International (“GBS/CIDP Foundation”) maintains this website as a convenience to its members and supporters. This website is designed for educational and informational purposes only and does not render medical advice or professional services. The information provided herein should not be used for diagnosing or treating any health problems or disease. It is not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians. By using websites owned and operated by the GBS/CIDP Foundation or its affiliates, you are agreeing to comply with and be bound by the following terms of use that may change at any time:  

Accuracy and Responsibility

GBS/CIDP Foundation has made its best efforts to ensure that the information appearing on this website is well-balanced, reflecting the most up-to-date knowledge and best clinical practice, but we do not pretend that it can be relevant to all situations, nor do we guarantee that it is in every respect accurate or complete. GBS/CIDP Foundation cannot accept responsibility for the actions of those who misuse this information.GBS/CIDP Foundation (including its employees and agents) assumes no responsibility for the consequences resulting from the use of the information herein or from the use of any information obtained from any link, or in any respect for the content of such information, including but not limited to, errors or omissions, the accuracy or responsible ness of factual or scientific assumptions, studies or conclusions, the defamatory nature of statements, ownership of copyright or other intellectual property rights and the violation of property, privacy or personal rights of others.GBS/CIDP Foundation is not responsible for, and expressly disclaims all liability for, damages of any kind arising out of use, reference to, or reliance on such information. No guarantees or warranties, including but not limited to any express or implied warranties of merchantability or fitness for a particular use or purpose, are made by GBS/CIDP Foundation with respect to such information. GBS/CIDP Foundation may update or change this website or links to other websites at any time.


Content of this website is copyright unless otherwise stated. Where copyright applies, visitors can download material for private research, study or in-house use only. Visitors must not copy, distribute or publish any material from this website. Any other use of copyright material requires the formal permission of GBS/CIDP Foundation.


All links are provided for information and convenience only, as a value-added service to members, supporters and visitors. GBS/CIDP Foundation cannot accept responsibility for the sites linked to, or for the information provided there. Links are neither referrals nor endorsements of the linked entities.

If you have questions about this Disclaimer, please contact us.

3) Forum Guidelines

Welcome to the GBS/CIDP Discussion Forums.

The purpose of these services is to promote awareness, education and communication regarding GBS/CIDP and its variants in an atmosphere of mutual respect.Please note that the discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians. The statements, views, opinions and recommendations of chatroom and discussion board users are strictly those of the authors. GBS/CIDP Foundation International does not endorse or recommend the opinions of treatment that may be expressed therein, and shall not be held responsible for any eventualities arising from the use of such statements, views, opinions and recommendations. Our discussion boards are private services, not public networks. Entering these areas is the same as entering any privately owned facility, like a conference room, theater, restaurant or shopping mall. The manners and laws of real life apply.These services are provided free of charge to members who agree to abide by the code of conduct described in the following Guidelines:We welcome people of all ages, races, religions, genders, national origins, sexual orientations and points of view to our online community. We do not tolerate expressions of bigotry, hatred, harassment or abuse, nor will we tolerate threats of harm. Because we encourage discussion and exchange of ideas, we do not allow threatening, defamatory, abusive, tasteless or indecorous statements. For the same reason, we do not allow sexually explicit material in conversations, titles, topics or nicknames.Your right to speak freely here must be exercised with courtesy and self-restraint. We cannot guarantee the content of comments that you will receive and from time to time, you may find other people’s comments offensive, harmful or inaccurate.

We encourage members not to give out personal information or passwords to anyone.

We do not allow any illegal activities. Specifically, we won’t let you advocate illegal conduct or participate in illegal or fraudulent schemes. You cannot use our boards to distribute unauthorized copies of copyrighted material, including photos, artwork, text, recordings, designs, or computer programs. In addition, we do not allow the trading or swapping of images that are sexually explicit, obscene or vulgar. Posting or transmitting of unauthorized or unsolicited advertising, promotional materials, or any other forms of solicitation to other members is not allowed.

We discourage disruptive conduct: persistent off-topic comments in a topic-oriented chat or discussion, statements that incite others to violate our Guidelines.

Members who violate those Guidelines will be banned from using the discussion boards. We reserve the right to immediately terminate or suspend access to our services for conduct that we believe interferes with other peoples enjoyment. We also reserve the right to amend or change these guidelines at any time and without notice. If you have questions about our Guidelines, or need to report a violation, please contact us.

When in doubt about appropriate behavior, remember that the GBS/CIDP website community is a virtual world, but the people in it are real.

4) Policy on Indirect Costs

Policy for indirect costs and administrative fees regarding grant support for studies sponsored by GBS/CIDP Foundation International  

January 4, 2012. The GBS/CIDP Foundation International is a patient support group funded exclusively by donations and has been designated as a non-profit corporation under IRS code 501C3. Accordingly, it is the policy of this organization that all grants awarded to investigators (and associated ancillary staff) will be used solely for the purposes of supporting the investigator in salary support and/or compensation for time required in the execution of any study. All Institutional Review Board and other related administrative fees are to be waived, and all indirect institutional charges will be funded at the 0% level.

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