Privacy Policy and Notice of Information Practices   

Thank you in advance for reading this policy.  This is our promise to you: Our board always acts in accordance with the nonprofit’s mission, vision, and values.  The Board  Directors at CADASIL Together We Have Hope (CTWHH) care about all stakeholders in the CADASIL community and strive to make decisions based on good balanced information.

CADASIL Together We Have Hope respects individual privacy and values the confidentiality of its visitors, partners, and donors.  

This Privacy Policy and Notice of Information Practices set forth CTWHH's practices regarding the collection, use, and disclosure of information that you may provide through this site and CTWHH sponsored discussion lists. Please read this entire privacy policy before using this site or submitting information through this site.

By using this site and whenever you submit information through this site to the CTWHH, you agree with the terms of CTWHH's Privacy Policy and Notice of Information Practices written below.

Privacy Policy and Notice of Information Practices:

Data Collection
CTWHH only collects personally identifiable data such as your name, address, telephone number, or email address when you voluntarily submit it to CTWHH.  CTWHH personnel may use this information as a means to contact you to obtain more information, to improve this site, or it might be used to provide you with information that you have requested or additional information, which CTWHH believes, may be of interest to you.  The data will not be transferred outside the company without your prior consent, but may be used within CTWHH or by a company acting as an agent of CTWHH for processing and mailing purposes.

CTWHH maintains the data collected in an electronic database of voluntarily submitted personally identifiable information.  CTWHH and its agents may exchange such information with each other or with you over the Internet or intranet systems for the purposes of carrying out the purposes of CTWHH.

While CTWHH makes every reasonable effort to protect the information collected through its web sites, please be aware that there always is some risk involved when submitting data over the Internet.  We cannot guarantee that our website is 100% safe from illegal tampering or "hacking.”  Any data transmitted over the Internet may be at risk; however, once it is received at CTWHH and entered into its local database, it has the same protection that CTWHH extends to its own confidential information.

We track the total number of visitors to our website, the number of visitors to each page of the website, and the domain names of our visitors' Internet service providers.  No personally identifiable information is gathered in this process.

Updating Your Information
If at any time, you wish to stop receiving emails or other communications from us, or if you have submitted personally identifiable information through our website and would like to have that information deleted from our records, please notify us. You also may request access to personal data about you that CTWHH holds and you may have the opportunity to request a correction or amendment to your personal data. As a reminder to you when exchanging emails, any email that you send or receive on your employer's email system may be the property of your employer. Consequently, your employer has the ability to review your personal information sent via email.

Links to Third Party Sites

As a convenience to our visitors, our sites currently contain links to a number of other (non-CTWHH) sites that we believe may offer useful information. Since we have no control over those sites, the privacy policy presented here does not apply to third party sites. You should contact these sites directly for information on their privacy policies, confidentiality agreements, and data collection/distribution procedures.

Discussion Lists

When you post to a CTWHH sponsored discussion list your e-mail address is made visible to the other list members. However, if you simply read discussion lists or announcement messages your e-mail is not revealed.   We ask that all posting is true and correct to the best of your knowledge.

Regarding posting to discussion lists, user posts are visible to everyone.  You do have the ability to modify or erase your posts if you wish.  Please provide links to health/medical information when you refer to it.

Information shared on the discussion lists is not to be shared with any personally identifying information off-list. We require that all list participants honor this confidentiality. While we cannot and do not expect that all communications between discussion list members be on the list - it is preferred that you share on list. This builds rapport, trust, and allows others to both benefit from and contribute to your experiences. CTWHH cannot be responsible for any communications that are made directly between discussion list members.

Archives of discussion lists will be posted on one or more CTWHH sponsored web sites in the future. We will endeavor to see if the technology is available when these archives are made available to prevent your e-mail address from being made visible in the archives. We cannot make that promise yet as the technology is not in place. These archives might be "indexed" and made available to one or more search engines. (Go to www.google.com and enter your name - you might be surprised what comes up!) 

Children's Policy

Our website is not intended or designed to attract children under the age of 18. We do not collect personal information from any person we actually know is a child under the age of 18.

Third Party Payments & Donation Processing

CTWHH uses well-recognized third parties such as PayPal to process credit card transactions for donations and processing fees. This is for your protection. These vendors use secure connections, and have both electronic & physical security systems in place to protect your personal financial information. CTWHH is made aware of every transaction and its amount - but we do not have (and do not want) access to your credit card information. We will never ask you for your personal identifying access or password for these third parties nor will we ask for your credit card number. If you ever believe that we have asked for this information please write or phone us immediately as there is likely some sort of fraud underway

Important Medical Disclaimer:

The content displayed in this website is designed to educate and inform. Under no circumstances is it meant to replace the expert care and advice of a qualified physician. Rapid advances in medicine may cause information contained here to become outdated, invalid or subject to debate. Accuracy cannot be guaranteed. This organization assumes no responsibility for how presented information is used.

Privacy Policy Updates

Should the Board Directors amend this policy, changes will be posted and dated here.  

Revised by the CTWHH Board of Directors
August 2013


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