Privacy Policy   Latest update on 3/12/09

Terms of Use   Latest update on 3/12/09

The NODCC is committed to protecting your privacy and ensuring you have a positive experience on our website. This following outlines our policy for handling personal information and online data collected on this website. If you give us personal information, we will treat it according to this policy.
We encourage you to read this privacy policy to ensure you understand the NODCC’s privacy practices.

Personal information we collect

Personal information is any information that can be used to identify an individual, and may include, but is not limited to, name, email address, date of birth, postal or other physical address, title, occupation, medical information and other information required to provide a service, deliver a product, or carry out a transaction you have requested. We will only use your personal information in the way we specify within this policy. We will not subsequently change the way your personal information is used without your consent.

How we use, transfer and share your personal information

* Your name and email address are used by us to create and confirm to you the creation of your account profile so that  you may participate in the forums and discussions on this site.

* Your address, phone number, and relationship to DCC (as indicated on the membership form) may be used to provide you with additional information regarding NODCC activities.

* We may transfer your personal information to third parties acting on our behalf for the purposes of processing or storage.

* We do not publish your name in membership and donor lists unless given permission by you on the membership and/or donation form. 

How to update or delete your personal information

We need your help in keeping the personal information you have shared with us accurate and up to date. Once you've joined the NODCC, you can update the information in your profile any time simply by logging in to your profile.

You may delete your information by canceling your membership. To do this, send an email to info@nodcc.org with “Cancel Membership” in the subject line and your name, username, and current password in the body of the email. You may also cancel your membership by sending a letter with this information to NODCC, PMB 363 18032-C Lemon Dr., Yorba Linda, CA 92286 or by FAX to 714-693-0808.

Retention of personal information

The NODCC will not retain your personal information longer than is necessary to fulfill the purposes for which it was collected or as required by applicable laws or regulations.

* We'll retain your personal information while you are an active member and while you are an inactive member. Personal information will be deleted upon written cancelation of membership. 

* If you ask to have your profile deleted, we'll delete your current profile with 72 hours of your request. Discussion Board comments and Resource Library contributions will NOT be deleted upon cancellation of membership.

Security of your personal information

The NODCC is committed to protecting the personal information you share with us. We utilize a combination of security technologies, procedures, and organizational measures to help protect your personal information from unauthorized access, use or disclosure.

All personal information transfers over the Internet are protected with Secure Sockets Layer (SSL) encryption technology.

While we strive to protect your personal information, we cannot ensure the security of the information you transmit.

We recommend you to take every precaution in protecting your personal information when you are on the Internet. For example, change your passwords often, use a combination of letters and numbers when creating passwords, and make sure you use a secure browser.

Children's privacy

The NODCC does not knowingly collect personal information from children under the age of 18, unless we attain written consent from the parent or legal guardian. If we learn that we have collected personal information about a child under the age of 18 without such consent, we will delete that data from our systems.

IP addresses

An IP address is a number automatically assigned to your computer whenever you access the Internet. IP addresses allow computers and servers to recognize and communicate with each other.  We ollect and log the IP address of all site visitors so that we can properly administer our system and gather aggregate information about how our site is being used, including the pages viewed.

Cookies

Like many other Web portals, we use cookies (small text files) and other similar technology to provide us with information relating to the sources of our site traffic. No personally identifiable information is stored in the cookie file that our site writes to your computer. Most Web browsers automatically accept cookies but allow you to modify security settings so that you can approve or reject cookies on a case-by-case basis. Our site requires that both cookies and JavaScript be enabled. If you reject cookies from this site, you won't be able to access the site

Surveys
You may be asked to complete surveys when you visit this site. Your response is entirely voluntary. We use information from surveys to better understand the needs of our users and to measure the value of applications, information and forums on this site.

Linked Web sites
The NODCC may provide links to other third-party Web sites which are outside our control and not covered by this policy. We encourage you to review the privacy policies posted on these (and all) sites. The NODCC is not responsible for content posted on third party sites.

Forums
The NODCC Discussion Board, Our Stories, and Resource Library are viewed by the public. Please consider this before posting material to them. Do not share any information or medical data that might lead to identification of a person in your care.

Contributors names and other identifying information are not available to the public.  However, members who are logged in will see contributor usernames adjacent to posts. These will be activated as links to the within-site email system. Members will receive a notice in their personal email notifying them when they have received a messages within the NODCC site.

The Family Partnership Program Networking Center is only available to members, both for posting and viewing. The NODCC created this unique members-only forum to facilitate connections between those who have shared medical and treatment concerns. When completing the survey, include only the medical and identifying information you want to be seen by other members.  Usernames will be posted with survey information in the Networking Center.

If you want to have one of your Resource Library entries or your Our Stories entry removed from the NODCC website, please send a letter stating the exact information you want removed, along with your name, username, and current password to info@nodcc.org or by post to NODCC, PMB 363 18032-C Lemon Dr., Yorba Linda, CA 92286 or by FAX to 714-693-0808. Information removed for the website will not be stored and therefore cannot be reposted by the NODCC.  Discussion board comments cannot be removed unless deemed offensive.

How we communicate with you
Upon completing the membership form on this site, we will confirm your account set-up at the email address you provide.  You will also receive mailings via post, email messages, and phone calls regarding NODCC activities upon occasion.

How to contact us
If you have a question or concern around how your data is collected and/or processed please follow the Contact us link at the top of any page to send us an e-mail at info@nodcc.org. The NODCC administrative staff will forward your concern/question to the appropriate area for response or resolution.

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By visiting NODCC.com and/or participating in NODCC.com interactive sections as a member (Discussion Boards, Our Stories, Resource Library, and Family Partnership Program Networking Center), you are agreeing to abide by our rules listed below. Our rules are designed to keep NODCC.com as a safe haven for people in need of information and support. We reserve the right to remove any post.

Medical Advice

This site does not provide medical advice, diagnosis or treatment. Anyone participating in or posting on this site will not provide, or imply that they are providing, medical advice, diagnosis, or treatment.

The information provided on this site is for informational purposes only and is not intended as a substitute for personal solicitation of professional medical, legal, or therapeutic advice. Statements on this site have not been evaluated by the Food and Drug Administration, and are not intended to diagnose, treat, cure, or prevent DCC or its symptoms. Information on the NODCC website does not constitute an endorsement for any course of treatment, medication, or other professional recommendation. While the NODCC aims for the information on this site to reflect the most up-to-date scientific and medical research, the NODCC cannot guarantee the accuracy of the site’s content. The information provided on this site is not intended, nor should it be used, as a substitute for consultation with a qualified health, educational, or legal professional.

Children’s Privacy

We are committed to protecting the privacy of children. You should be aware that this Site is not intended or designed to attract children under the age of 18. We do not collect personally identifiable information from any person we actually know is a child under the age of 18.

Personal privacy

No participant on NODCC.com is allowed to provide identifiable information about their patients or individuals with DCC who are not under the members’ direct legal or parental guardianship. This includes a individual’s name, address, town, or any other information that would enable personal identification of that individual.

When joining the NODCC, you have the opportunity to choose the username that will be seen by other members. We advise that you keep the name appropriate and limit identifying elements as you see fit. With this user account you are about to register, you agree to never give your password out to another person except an administrator, for your protection and for validity reasons. You also agree to never use another person's account for any reason.  We recommend you to take every precaution in protecting your personal information by changing your passwords often, using a combination of letters and numbers when creating passwords, and making sure you use a secure browser.

Harassment from other sites

You may not, and agree that you will not, use other internet websites for the purpose of harassment, name calling, insults, slander, or "flaming", of other members of NODCC.com. If you do so, you are violating our policies of Respect and Privacy, and you will be temporarily or permanently banned from the site at our discretion.

You may not, and agree that you will not, reproduce, publish, display, or post information obtained from or through any part of the NODCC web site onto another internet web site, computer-related environment, or any other form of media, electronic, print or other for broad distribution (> 50 people), without the express written permission of the NODCC or the original author of the material. Material from the NODCC web site may be reproduced (with acknowledgements of NODCC copyright) for the education of relatives, professionals, and caregivers of those with DCC. 

Copying and pasting threads, blogs, photos, images, or other information from the message boards, or any other part of the NODCC web site onto another internet site or medium, without the written permission from the NODCC and/or of the original author, violates our Privacy Policy and Terms of Use. Such offenders will be temporarily or permanently banned from NODCC.org at our discretion.

Respect of member contributions

Our most important rule of all is respect for other members using NODCC.com. We invite and encourage a healthy exchange of opinions and ideas; disagreements are okay. However, any post on the forums must be given with a sense of respect and caring for the other person. The real objective of our community is to connect with people in similar caregiving situations, share knowledge, meet new friends and most of all, not feel alone. Name calling, insults, slander, "flaming" and attacks are not appropriate and will not be tolerated.

In joining the NODCC as a member, you agree that you will not post any material on NODCC.com which is false, defamatory, inaccurate, abusive, vulgar, hateful, harassing, obscene, profane, sexually oriented, threatening, invasive of a person's privacy, adult material, or otherwise in violation of any International or United States Federal law. You also agree not to post any copyrighted material unless you own the copyright or you have written consent from the owner of the copyrighted material.

Note that it is impossible for the staff or the board of NODCC to confirm the validity of member posts. Please remember that we do not actively monitor the messages posted in discussion boards, resources listed in the Resource Library, or stories reported in Our Stories, and as such, the NODCC is not responsible for the content contained within. We do not warrant the accuracy, completeness, or usefulness of any information presented. The posted messages express the views of the author, and not necessarily the views of the NODCC, its staff, its subsidiaries, or its board. Anyone who feels that a posted message is objectionable is encouraged to notify an administrator or moderator of this website immediately. The NODCC reserves the right to remove objectionable content, within a reasonable time frame, if they determine that removal is necessary. This is a manual process, however, please realize that they may not be able to remove or edit particular information immediately. This policy applies to member profile information as well.

Members remain solely responsible for the content of they post anywhere on NODCC.org. Furthermore, you agree to indemnify and hold harmless the owners of this forum, any related websites to this forum, its staff, and its subsidiaries. The NODCC also reserves the right to reveal your identity (or any other related information collected on this service) in the event of a formal complaint or legal action arising from any situation caused by your use of this site.

Personal, non-commercial use only

This web site is for personal, non-commercial use. Commercial messages or solicitations on NODCC.com message boards or forums are not allowed. These posts will be deleted.

Spam

Spam is not allowed. Spammers will be banned from the site permanently. Spam massages are repeated posts of any type – commercial, phishing, and messages where the poster has an agenda which makes or does not make sense.

Medication and Drugs

Federal regulations strictly FORBID sale or any type of exchange of medications online. Posting messages of that type is not allowed. This includes messages offering medications for sale, or soliciting the sales of prescription medications as well as seeking to donate or receive such medication as donation. These posts will be deleted and repeat offenders may be banned from the site without further warning. (For more government-related information go to http://www.fda.gov/oc/buyonline/faqs.html)

We Reserve the Right....

NODCC.com reserves the right to remove a post which does not relate to the topic being discussed in the board. NODCC.com also reserves the right to prohibit or delete messages that are thought to violate applicable law (including the sale of or solicitation of the sale of prescription drugs or medical services). NODCC.com also reserves the right to prohibit or delete messages if the offended party writes us requesting its removal.

Copyright Message

Please get permission before posting any copyrighted material on this site. (Literature and images)

Let us Know

If you see someone violating our policies, please let us know by using the Contact Us tab on the Home page. We will protect your identity.

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