放弃, 隐私政策 (including EU), and Confidentiality
Introduction
丙酸血症基金会 (PAF) takes your privacy seriously. Our Privacy Policy describes how we collect and use personal information you provide to us. With this knowledge, you can make informed decisions about using our site and services. We will not use or share your information with anyone except as described in this Privacy Policy. If you have any queries about this policy, please contact PAF at [email protected].
放弃
Propionic Acidemia Foundation网站仅用于教育目的，并非旨在用作医疗建议,,en,您的通信副本可能会保留在PAF的总部办公室和回复的个人,,en,Propionic Acidemia Foundation将建立和维护包括家属在内的会员名单,,en. 本网站提供的信息不应该被用于诊断或治疗健康问题或疾病. 它并不能代替专业的护理. If you suspect that you or your children may have Propionic Acidemia, you should consult your health care provider.
的Web站点的隐私政策 (includes EU)
为了使本通知容易找到, 我们将其作为一个链接的的PAF网站上每一页的底部, 和个人信息可能会被要求在每一点上，. 我们定义的个人信息，包括: 名称, 电子邮件名称, 网络地址, 物理地址, 电话号码, 调查回应, 我们的注册表信息和您的信件内容.
What information do we collect?
When you visit our website, you may provide us with two types of information: (1) personal information you knowingly choose to disclose that is collected on an individual basis (i.e., information you enter on a registration form, or contact form), 和 (2) website use information that is aggregated with other users about the way you browse our website. For this website use information, PAF’s web server automatically recognizes but does not collect or use your IP address. (See Website Use Information below).
Personal Information you share with us
Registration information
You are not required to provide any personal information on our website unless you choose to do so. You may provide us with personal information on our registration form to help us provide you with services, support or information. We will never share your registration form with anyone. You may contact us to give us permission to share specific information contained in your membership form, for example your name and email address/phone number to network you with other families with the same condition. You may provide personal information when you register for PAF events, subscribe to PAF e-newsletters, birthday club or other notifications. PAF will never sell or trade your personal information with any other entity. When you donate to PAF online through PayPal or pay an event registration fee online, you provide PAF with your name, 地址, and email address in order to communicate with you about those activities. When you choose to participate in various PAF fundraising, awareness campaigns or volunteer activities, you may choose to provide us with additional information including, but not limited to, your name, contact information, images or photographs, and stories or narratives authored by you.
Email Information
If you choose to correspond with us through email, we may retain the content of your email messages together with your email address and our responses. Our website does not automatically recognize your email address and requires that you enter it in any email communication submission form.
Website Use Information
PAF’s web server automatically recognizes but does not collect or use your domain name (IP address). Similar to other nonprofit and commercial websites, our website utilizes a standard technology called “cookies” (see description below) and web server logs to collect information about how our website is used. Information gathered through cookies and web server logs may include the date and time of visits, the pages viewed, time spent on our website, and the websites visited just before and just after our website.
What is a “cookie”?
A cookie is a very small text document that often includes an anonymous unique identifier. When you visit a website, the web server asks your computer for permission to store this file in a part of your hard drive specifically designated for cookies. Each website can send its own cookie to your browser if your browser’s preferences allow it, 但 (to protect your privacy) your browser only permits a website to access the cookies it has already sent to you, not the cookies sent to you by other sites.
How do we use information collected from “cookies”?
As you visit our website, the site uses its cookies to differentiate you from other visitors. In some cases, cookies are used to recognize you as a return visitor. Cookies, in conjunction with our web server’s log files, allow us to calculate the aggregate number of people visiting our website and which parts of the site are most popular. This helps us gather feedback in order to constantly improve our website and better serve our mission. Cookies do not allow us to gather any personal information about you and we do not store any personal information that were provided by your cookies. Most browsers allow you to opt out of third party cookies, while leaving first party cookies switched on. Third party cookies are issued by web services other than the website you’re looking at the time and can allow those web services to track you as you browse from site to site. Facebook and Google do this routinely, as do a number of other advertising networks. If you wish to turn off third party cookies, please go to your browser settings to make the adjustment.
What about another website linked from our website?
We use links to outside resources, and sites that store our website video content. These are called “external sites.” We are not responsible for the practices employed by the websites linked to or from our website, nor the information or content contained therein. Links to other websites are provided solely as pointers to information on topics or resources that may be useful to the users of our website. Please remember that when you use a link to go from our website to another website, our Privacy Policy is no longer in effect. Your browsing and interaction on any other website, including websites which have a link on our website, is subject to that website’s own rules and policies. Please read over that website’s privacy policies before proceeding.
How do we use the information you provide to us?
We use personal information for purposes of communicating with you to notify you about important changes to our website, information you may have requested, and news concerning our research, awareness, support, education programs, as well as fundraising and other events. You may contact us at [email protected] to be removed from this communication.
Sharing information with third parties
PAF does not sell or trade your personal information with any organization or entity. You are not required to provide any personal information on our website unless you choose to do so. We have donation slips and also use PayPal to process donations We use the information provided to acknowledge receipt of your donation for tax purposes. If you give a gift to PAF, your name and address will be placed on our donor mailing list. If you do not wish to receive mailings we send to our donor mailing list or wish to be removed from our donor mailing list, please contact us at [email protected].
Certain Disclosures
We may disclose your personal information if required to do so by law or subpoena or if we believe that such action is necessary to (a) conform to the law or comply with legal process served on us or Affiliated Parties; (b) protect and defend our rights and property, the site, the users of the site, and/or our Affiliated Parties; or (Ç) act under circumstances to protect the safety of users of the site, us, or third parties.
How do we protect your information?
We have strict policies and procedures in place to keep your information private and secure. It is protected from unauthorized access by firewalls and other industry best practices. Only PAF board members or volunteers who need access to personal identifiable information to perform a specific function are granted access to that information. We do not share your information with third parties or publicly. If you email us, please remember that email is not recognized as a secure medium of communication. Some of the information you may enter on our website may be transmitted securely (e.g. information used to complete an online credit card transaction through PayPal). Outside of these secure transmissions, PAF cannot, 但, ensure or warrant the security of any information you transmit to us or guarantee that your information on the website may not be accessed, disclosed, altered, or destroyed by breach of any of our physical, technical, or managerial safeguards. Please email us at any time at [email protected] if you have any questions or concerns.
How can you access and correct your information?
You may request access to all your personally identifiable information that we collect and maintain in our database. To correct or change your contact information, please email [email protected] . You may opt out of email communications at any time by clicking the unsubscribe link that is included at the bottom of email communications from PAF. You may also contact us at [email protected] to be removed from email communication.
When do we delete information?
We retain your personal information for the period necessary to fulfill the purposes outlined in this Privacy Policy unless a longer retention period is required or permitted by law. We will periodically review and remove invalid physical addresses, email addresses, and phone numbers as we become aware of them and remove contacts that are inactive or irrelevant to our work. We will also anonymize donations at the donor’s request.
Your Privacy Rights
By using our website, you consent to our collection and use of your personal information as described in this Privacy Policy. If we change our privacy policies and procedures, we will post those changes on our website to keep you aware of what information we collect, how we use it, and under what circumstances we may disclose it. As a supporter of PAF, or user of our services who gives us permission to collect your personal data, you have rights. These include the right to review the data we have collected, the right to have your data removed, and the right to contact a supervisory authority if you would like to lodge a complaint. Only authorized PAF staff are responsible for managing your personal data. The data is used to increase the efficiency and quality of communications between authorized PAF staff and our PAF families, service recipients, supporters and donors. You have the right at any time to withdraw consent from PAF to retain your personal data. Withdrawal of consent can be done by emailing [email protected] .
Children’s Privacy
Protecting the privacy of young children is critically important to us. For that reason, we do not knowingly collect or solicit personal information from anyone under the age of 13 or knowingly allow such persons to register. If you are under 13, please do not send any information about yourself to us, including your name, 地址, telephone number, or email address. No one under age 13 is allowed to provide any personal information to us on our website. In the event that we learn that we have collected personal information from a child under age 13 without verification of parental consent, we will delete that information as quickly as possible. If you believe that we might have any information from or about a child under 13, please contact us.
保密
Propionic Acidemia Foundation is firmly committed to maintaining the confidentiality of your personal information in all of our activities and programs. PAF董事会成员和志愿者的道德和法律义务，尊重所有的机构和参与者的隐私信息. 此外, 这一义务延伸到保护和维护从调查得到的所有信息的保密性, 研究, 数据库, 血库, 患者登记, 或组织活动.
将作出一切合理的努力保持我们所拥有的所有个人信息的安全性. Access to personal information will be limited to PAF Board members and officers and to individuals who have a need to use such information in the course of their work on approved projects for and overseen by Propionic Acidemia Foundation and who have been instructed in the confidentiality requirements of the organization. 如果您想查看收集的个人信息和/或要求改正, please email [email protected] or mail us at the listed address.
程序的保密
1. 所涉及的所有个人PAF的程序或数据, 无论是在一名工作人员, 志愿者或顾问容量的, 应当签订保密保证, which will be kept on file at PAF’s home office.
2. 个人工作与PAF以任何身份应保持完全保密的姓名和个人中的任何数据文件所载的, 包括这些人’ 隶属关系或遗传性疾病. 所有的信息或意见, 直接或间接的信息是否据悉, 也应保密. 个人，应当采取合理的谨慎防止被别人在他们身上的机构或个人的消费信息.
3. 任何包含个人识别码数据 (名称, 等等) 在不使用时，应保持在一个安全的地方. Reasonable caution shall be exercised in limiting access to information to only those persons who are working with Propionic Acidemia Foundation, 上一个项目或其他组织的活动的一部分, 并已指示在适用的保密要求的组织.
4. 当要被发送到另一方的标识符的记录或形式, 如为数据输入, 任何外界人士，应被告知这些程序，并应签署保密形式的保证.
如果您有任何问题或疑虑，请发送电子邮件至 [email protected]
丙酸血症基金会 1963 McCraren路. 高地公园, “. 60035 电话: 免费电话 1-877-720-2192