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Privacy Policy

Last Updated: November 2, 2018

American Partnership for Eosinophilic Disorders (“APFED”, “we” or “us”) respects your privacy. APFED is a 501(c)(3) organization (EIN: 76-0700153) based in Atlanta, GA. APFED and its affiliates offer education and awareness, research, support, and advocacy to patients and families affected by eosinophil-associated diseases.

This Privacy Policy applies to APFED’s collection and use of personal information through all channels, including online channels d through offline donations and APFED programming. As described in more detail below, APFED collects personal information to conduct its programs, update donors on the impact of their contributions, and communicate with its members about current events and news of interest to the eosinophilic community. This Privacy Policy is meant to help you understand what personal information APFED collects, why APFED collects it, and to inform you about your rights to your personal information. When you use APFED’s Website, and participate in APFED’s programs or events, you’re trusting APFED with your personal information. APFED is committed to protecting the personal information that you share. If you have any comments or questions about this policy, please contact mail@apfed.org.

In addition, your use of apfed.org (APFED’s ‘Website’), is subject to this Privacy Policy and by using the Website, you accept and expressly agree to our practices surrounding the collection, use, and sharing of personal information provided by you in the manner described in this Privacy Policy. If you do not agree with the terms of this Privacy Policy, you cannot, and we do not authorize you to, access, browse, or use the Website. Be advised that any external links that take you to third-party websites are governed by separate privacy policies.

Our processing of your personal information, such as your name, address, e-mail address, or telephone number, shall be undertaken consistent with the requirements of applicable privacy laws, including, but not limited to, the General Data Protection Regulation (“GDPR”). Whether we serve as the data controller or processor, APFED has implemented numerous technical and organizational measures to ensure the protection of personal information processed through the Website. However, Internet-based data transmissions may in principle have security gaps, so please understand that absolute protection is not assured.

 

Processing Personal Information

APFED is committed to adhering to the Digital Advertising Alliance self-regulatory principles (“DAA Principles”) that govern best practices for Interest-based and Interest-based advertising (“IBA”). Our use of IBA is described in more detail below. Consistent with DAA Principles, if you would like to opt-out from such third-party data collection for use in IBA, please visit the Digital Advertising Alliance Consumer Choice Page at www.aboutads.info/choices.

APFED collects and processes personal information to provide better programs and services to all its constituents (e.g., members, donors, supporters, volunteers, industry partners) such as surveys and applications. The information APFED collects, and how that information is used, depends on how you choose to use our programs and services.

You do not have to give us any personal information to browse this Website. However, you may be asked to provide personal information to submit or request information from us or to use the services offered through this Website. Once you provide us with your personal information, you are no longer anonymous to us.

The personal information that we collect includes:

 

Purpose of collection Personal Information that we collect Basis for collection

Inquiring about our organization and its work

Name, email, message

Consent: You give your active consent.

Subscribing to email updates about our work, current events, and news of interest to the eosinophilic community

Name, email, address, eosinophil-associated disease of interest

Consent: You give your active consent.

Making a donation or purchasing products from our gift shop

Name, email, phone, billing/shipping address, payment information

Consent: You give your active consent.

Contract: By making a donation or purchasing a product you have entered into a contractual relationship with APFED.

Becoming a paid APFED member

Name, email, billing/shipping address, payment information, password

Contract: By paying your annual membership dues you have entered into a contractual relationship with APFED.

Completing a survey

Disease of interest, information about health-related experiences

Consent: You give your active consent.

Completing an application

Name, email, billing/shipping address, phone, annual household income, name and ages of family members diagnosed with an eosinophil-associated disease, documentation of the diagnosis, list of projected expenses, income documentation

Consent: You give your active consent.

Website functionality

Website activity collected through cookies

Consent: You give your active consent (Note: Please see our Cookie Policy for additional information about our use of cookies).

 

APFED only collects personal information that is reasonable or necessary to accomplish the purpose of your interaction with APFED. You may choose not to provide this information but as a result, you may not be able to engage in certain activities. Any personal information provided by you will be used only as described in this Privacy Policy.

 

Using Your Personal Information

APFED (and the parties below whom we share personal information) will only use your personal information in a matter that is appropriate considering the basis on which the personal information was collected in accordance with the table above. APFED may use information collected from or provided by you, and the technical information logged by our servers to process your donations for the following purposes:

Reply to inquiries you send to APFED. APFED uses your personal information to contact you if you email mail@apfed.org and request help.

Process your donations or other transactions you initiate. APFED uses your personal information to process your donations and/or purchases, contact you regarding any questions related to your donation and/or purchase and mail acknowledgments related to your donation (if applicable). Use of this personal information is necessary for the performance of the contract between you and us in connection with your donation and/or purchase. If you do not provide the necessary personal information to APFED or our payment service provider, APFED will not be able to process your donation and/or purchase. APFED explicitly indicates the fields for mandatory completion.

Measure performance. APFED uses data and personal information for analytics and measurement to understand how its programs and services are used. For example, APFED analyzes personal information about your usage of the Website to do things like optimize design and content development. Personal information may also be used to measure the usability and effectiveness of APFED’s own marketing efforts on third-party sites or platforms.

Communicate with you. APFED uses your personal information to send you newsletters, information about events, donation matching opportunities, research opportunities, advocacy related campaigns, APFED’s programs and services, and updates about how donations have been used, as well as news of interest to you and the eosinophilic community, and fundraising appeals. APFED may also use your personal information to invite you to participate in surveys or questionnaires. APFED will only send you this information by email if you consent at the time you provide us with your personal information or subscribe to a newsletter, either free or through membership or if necessary for our fulfillment of a contractual obligation. If you contact APFED, we may keep a record of your request in order to help solve any issues you may be facing.

At any time you may choose not to receive communications from APFED. You can unsubscribe or edit your email preferences by logging into your account or by clicking the link at the bottom of the emails that are sent to you. You may also contact APFED directly for assistance at mail@apfed.org.

Compliance with legal obligations. APFED may also use and process your personal information and content, using different technologies to comply with legal obligations, such as for the following purposes.

  • To enforce the Terms of Use or Privacy Policy
  • To contact you when APFED believes it to be necessary
  • To comply with any applicable law and assist law enforcement agencies is legally mandated or meets the applicable legal standards and procedures
  • To take any action in any case of dispute or legal proceeding of any kind between you and APFED
  • For purposes provided under this Privacy Policy

 

If we wish to use your personal information for a purpose that isn’t covered in this Privacy Policy, then we will provide you with a new notice explaining this new use prior to commencing the processing and setting out the relevant purposes and processing conditions. Where and whenever necessary, we will seek your prior consent to the new processing.

APFED’s database contains private information including name, billing/shipping address, phone, email, and medical information about your connection to and/or experiences with eosinophil-associated diseases. If you provide any private or nonpublic personal information it will be restricted to site administrators and individuals on a need-to-know basis and will not be sold or given outside of APFED without consent from you.

 

Sharing Your Personal Information

APFED does not sell, rent, or lease a donor or member’s personal information to third parties.

APFED will not share your personal information with others without your permission except for the following purposes with our representatives, service providers, and contractors in order to:

  • Process and/or acknowledge your donations, product orders, and/or membership registrations
  • Communicate news and information about APFED and the eosinophilic community

 

Unless you ask APFED not to, your personal donation information will be shared under the following circumstances:

  • When you donate to a fundraiser, APFED shares your name and the date and amount of your donation with the person who created the fundraiser.
  • When you make a donation that is part of a campaign sponsored by your employer, or when your employer is being asked to match your donation, APFED will share your name, email address, phone number, and the amount of your donation with your employer.
  • Each time you make a donation, APFED will give you the opportunity to tell us not to share your personal information in the ways described above (except in the case of employer matched donations) by selecting to be “anonymous” during the checkout process.

 

APFED may also be required to disclose your personal information in the following circumstances:

  • If APFED is required, or reasonably believes that it is required by law to share or disclose your information (e.g., subpoena, court order, or legal process) including to meet national security or law enforcement requirements
  • In any case of dispute or legal proceeding of any kind between you and APFED
  • In any case where APFED determines that disclosure is needed to protect its rights or property, or the rights or property of another person, in which case APFED will implement appropriate safeguards to ensure that your personal information continues to be protected
  • To detect, prevent, or otherwise address fraud, security, or technical issues

 

We may compile de-identified personal information and other information collected through the Website on an aggregate basis. This information may include, without limitation, the number of users who have registered for the Website and demographic information about users of the Website. Such aggregate information does not identify you individually. We may use aggregate information and share aggregate information with third parties for any of the purposes specified in this Privacy Policy, and for any other lawful purpose.

 

Controlling Your Personal Information

You can always choose whether or not to provide information on the Website. However, if you choose not to disclose certain information, you may not be able to register as a user of the Website, which may limit your access to certain portions of the Website.

As described in more in our Cookie Policy located at [insert link to Cookie Policy], you can configure your browser not to accept cookies or to notify you when a cookie is being sent. 

You may view and edit certain portions of your personal information that you provide to us and email preferences by logging into apfed.org. You can also request to change your personal information and email preferences by contacting us at:

Email:
mail@apfed.org

Postal Address:
American Partnership for Eosinophilic Disorders
PO Box 29545
Atlanta, GA 30359

Phone:
(713) 493-7749 (8am – 4pm CST, Monday – Friday)

 

Retaining Personal Information

APFED complies with its obligations under applicable privacy laws by: keeping personal information up to date where needed based on the purposes for which the personal information is being processed; by not collecting or retaining excessive amounts of personal information; by ensuring that appropriate technical measures are in place that are designed to protect personal information from loss, alteration, misuse, unauthorized access and disclosure as it is transmitted, stored, or otherwise processed, and by using appropriate measures to securely destroy personal information when it is no longer needed by APFED.

 

Cookies

A cookie is a small packet or file of letters and numbers that is downloaded on to your computer when you visit a website. The file is used to send information back to a website’s servers each time the website is accessed. Cookies are used by many websites and can do a number of tasks, such as remembering your preferences, recording what you have put in your shopping basket, and counting the number of people looking at a website.

APFED may use cookies for various purposes, such as to save you the need to re-enter your username and password each time you log in, to facilitate the use of the Website, to collect statistical information, to verify information, and for information security purposes.

By using the Website you agree to usage tracking and targeted IBA. If you do not wish to have cookies track your usage for these purposes, please refuse all or some browser cookies, or do not use the Website. 

Where cookies are used to collect personal information, APFED will list these purposes in the Processing Personal Information section above, along with other personal information that we collect. However, we also use some cookies that do not collect personal information but that do help us collect anonymous information about how people use APFED’s Website. APFED uses Google Analytics for this purpose. Google Analytics generates statistical and other information about website usage by means of cookies, which are stored on users’ computers. The information collected by Google Analytics about usage of APFED’s Website is not personally identifiable. The personal information is collected anonymously, stored by Google and used by APFED to create reports about Website usage. Google’s Privacy Policy is available at https://policies.google.com/privacy.

Some of the cookies used may expire when a session ends and you exit your browser. Other cookies are saved on your computer’s hard drive. If you wish to block the Website’s cookies, then please use the help button in your browser and follow the necessary instructions. However, bear in mind that disabling cookies may complicate or even prevent your use of the Website, or certain features thereof.

Some advertisers may provide you with the choice to opt-out of having your information used for interest-based advertising. If you would like more information about interest-based advertising, or for information about how to opt-out of interest-based advertising, please visit the Network Advertising Initiative’s (“NAI”) consumer website at http://www.networkadvertising.org/understanding-online-advertising, and in particular, NAI’s Ad Network “Opt-Out” page at http://www.networkadvertising.org/choices/. Even if you opt-out of interest-based advertising, we may still collect and use information about your use of the Website to the extent otherwise permitted by this Privacy Policy (such as to analyze Website traffic and usage, conduct website analytics, administer the Website, etc.). In addition, if you opt-out of receiving interest-based advertising from a particular advertiser, the advertiser may still provide advertisements to you, but the ad will not be targeted to you based on your online activities. For additional assistance with opting-out, please contact us directly at mail@apfed.org.

 

Advertising

The APFED Website is funded entirely by the operating income of the organization and does not accept advertisements. APFED does receive support in the form of educational grants from corporate sponsors. Sponsorship does not influence the content of educational materials or APFED’s Website.

We may participate in interest-based and interest-based advertising. This means that you may see advertising for us on other websites, applications and social media based on your behavior across websites, applications and social media. We may target ads based on data we have collected, or data provided by third parties alone or in combination with the data we collect ourselves. If you choose to interact with specific third parties who advertise through the Website, the information you provide to them is subject to the conditions of their specific privacy policies.

 

Information About Children

APFED does not require information to be provided about Website visitor’s ages. From time to time, we do have surveys or applications on our Website that may capture information about children. This information is subject to this Privacy Policy, and kept confidential, as noted above.

 

Website Content Usage 

All material contained on this Website is the property of APFED. Reproduction of any material on this site, in whole or in part, is strictly forbidden without the express written consent of APFED. For permissions, please email mail@apfed.org.

 

Links to Other Websites

Other websites have their own privacy policies. When you provide personal information at one of those sites, you are subject to the privacy policy of the operator of that site, not APFED’s Privacy Policy. APFED encourages you to read those policies before submitting any personal information. You should take steps to safeguard your personal information online. To learn more about how to protect yourself, visit the Federal Trade Commission website (US) or the Information Commissioner’s Office (UK).

 

Personal Information Security

APFED understands the importance of keeping your personal information secure and confidential. APFED’s Website site uses SSL encryption when displaying and collecting personal information. APFED has security measures in place to protect the loss, misuse, and unauthorized access, disclosure, alteration, and destruction of the information under APFED’s control. APFED employs strict security measures to safeguard online transactions. All personal information is stored in a secured database.

In addition, we restrict access to personal information to APFED employees and consultants, and designated volunteers who need that information in order to process it. Anyone with this access is subject to strict contractual confidentiality obligations and may be disciplined, terminated, or pursued through legal action if they fail to meet these obligations.

Although APFED takes great efforts to protect your personal information and protect our systems against cyber attacks, APFED cannot guarantee and you cannot reasonably expect that APFED’s databases will be immune from any wrongdoings, malfunctions, unlawful interceptions or access, or other kinds of abuse and misuse.

 

Personal Information Storage

Your personal information will be stored on servers of APFED’s hosting service provider (Salsa Labs) in the United States and therefore may be processed on servers outside of the country where you live. APFED will take all steps reasonably necessary to ensure that your personal information is treated securely and in accordance with this Privacy Policy. Data protection laws vary among countries, with some providing more protection than others. Regardless of where your information is processed, APFED applies the same protections described in this policy.

When APFED receives formal written complaints, it will respond by contacting the person who made the complaint. APFED works with the appropriate regulatory authorities, including local data protection authorities, to resolve any complaints regarding the transfer of your personal information that APFED cannot resolve with you directly.

 

European Union and GDPR Requirements

If the European Union (EU) data protection law applies to the processing of your personal information, APFED provides the controls described in this policy so you can exercise your right to request access to, update, remove, delete, and restrict the processing of your information.

If your personal information is subject to the GDPR, the data controller for the purposes of GDPR or other data protection laws applicable in Member states of the European Union and other provisions related to data protection is:

American Partnership for Eosinophilic Disorders
PO Box 29545
Atlanta, GA 30359
mail@apfed.org

The EU data protection law provides a range of rights over your personal information. If your personal information is subject to the GDPR, you have the following rights with respect to your personal information:

Right to access: You can access your account information or make changes or updates at any time by going to apfed.org and clicking Login. APFED does its best to keep your personal information accurate and up to date, to the extent that you provide us with the personal information we need to do so. If your personal information changes (for example, if you have a new email address or mailing address), then you are responsible for notifying APFED of those changes. Upon request, APFED will provide you with a copy of the personal information that we have. You can submit a request to access a copy of your information by emailing mail@apfed.org.

Right to erasure: If you wish to have your personal information removed from our system, you can do so by emailing mail@apfed.org. For privacy and security, requests must come from the email address tied to your personal information.

Right to rectification: If your personal information is inaccurate or incomplete, you are entitled to ask that APFED corrects or completes it. If APFED shared your personal information with others, it will tell them about the correction where possible. If you ask APFED, and where possible and lawful to do so, APFED will also tell you with whom your personal information was shared so you can contact them directly.

Right to restrict processing: You may ask APFED to restrict or ‘block’ the processing of your personal information in certain circumstances, such as where you contest the accuracy of the personal information or object to us processing it (please read below for information on your right to object). APFED will tell you before we lift any restriction on processing. If APFED shared your personal information with others, APFED will tell them about the restriction where possible. If you ask APFED, and where possible and lawful to do so, APFED will also tell you with whom we shared your personal information so you can contact them directly.

Right to data portability: You have the right to obtain your personal information from APFED that you consented to give us or that was provided to us as necessary in connection with APFED’s contract with you. Upon request, APFED will give you your personal information in a structured, commonly used and machine-readable format.

Right to object: You may ask APFED at any time to stop processing your personal information, and APFED will determine whether such restriction on processing is appropriate.

Right to withdraw consent: If APFED relies on your consent to process your personal information you have the right to withdraw that consent at any time, but this will not affect any processing of your personal information that has already taken place.

Right to lodge a complaint with the data protection authority: If you have a concern about APFED’s privacy practices, including any concerns about APFED’s collection, use, or processing of your personal information, you can contact us using the contact information provided above. In the event of a privacy-related issue or complaint, we will investigate and attempt to promptly resolve any complaints and disputes regarding use and disclosure of personal information

For complaints that cannot be resolved, if your personal information is subject to the GDPR, we commit to cooperating with the panel established by the EU data protection authorities (DPAs) or the Swiss Federal Data Protection and Information Commissioner (FDPIC), as applicable, and comply with the advice given by the DPAs or FDPIC about personal information transferred from the EU or Switzerland.

In order to facilitate the handling of complaints, individuals in the EU can choose to contact their national DPA or use the form located at this link:http://ec.europa.eu/newsroom/document.cfm?doc_id=42962

Individuals in Switzerland can contact the Swiss FDPIC by visiting: https://www.edoeb.admin.ch/edoeb/de/home.html

This independent dispute resolution process is provided at no cost to the individual.

If you would like to access the rights listed above, or any other legal rights you have over your personal information under current legislation, please email mail@apfed.org.

Please note that relying on some of these rights, such as the right to deleting your personal information, will make it impossible for APFED to continue to deliver communications to you. However, where possible APFED will always try to allow the maximum access to your rights while continuing to deliver as many communications, programs, and services to you as possible.

If you have questions, contact APFED at mail@apfed.org. And you can contact your local data protection authority if you have concerns regarding your rights under local law.

 

Hosting

The Website is hosted in the United States. All matters relating to the Website are governed exclusively by the laws of the State of Texas in the United States of America and not the jurisdiction in which you are located. If you are located outside of the United States of America and you contact us, please be advised that any information you provide to us will be transferred to the United States of America and that by submitting information, you explicitly authorize such transfer. 

 

Transfer of Data Abroad

If your personal information is subject to the GDPR, APFED will transfer personal information from the European Economic Area (EEA) to a location outside the EEA only when there has been a documented adequacy determination, or where APFED has confirmed adequate privacy protections. If APFED transfers personal information to a third party acting as an agent of APFED, we will also obligate the third party to have adequate privacy protections in place.

APFED may transfer personal information to and on behalf of clients and third parties with whom APFED has an existing service agreement or as part of our legal obligations, each of which shall be subject to APFED policies, and only to the extent necessary for purposes of legitimate interests pursued by the data controller (or by a third party).

 

Automated Decision Making

Under the GDPR, data subjects have the right not to be subject to a decision based solely on automated processing, including profiling, which produces legal effects concerning him or her, or similarly significantly affects him or her, as long as the decision (1) is not is necessary for entering into, or the performance of, a contract between the data subject and a data controller, or (2) is not authorized by Union or Member State law to which the controller is subject and which also lays down suitable measures to safeguard the data subject’s rights and freedoms and legitimate interests, or (3) is not based on the data subject’s explicit consent. We do not engage in automated decision making.

 

Privacy Policy Updates

We may change or update the Website or any of our policies and procedures without prior notice, except that if any changes are likely to have an adverse impact on your rights under data protection law, we will use reasonable efforts to notify you of the changes in advance in writing or by postal mail, and, where required, obtain your consent to our activities. We will post a notice on this Website to advise you of any significant changes to this Privacy Policy and indicate via the “Last Updated” legend in this Privacy Policy when it was most recently updated. Except to the extent that your express consent to any change or update is required under data protection law, your continued use of the Website signifies your continued assent to the terms of this Privacy Policy, as updated or amended at that time.

 

Contact Us

You may contact APFED by sending an email to mail@apfed.org. APFED tries to reply promptly to every message received. This information is used to respond directly to your questions or comments. APFED may also file your comments and share them with its team to improve its service in the future.