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Privacy Policy

Shwachman-Diamond Syndrome Alliance PRIVACY POLICY

Last Revised: January 2021

This Privacy Policy covers the use of personal data by the Shwachman-Diamond Syndrome Alliance Inc., a 501(c)(3) public charity based in the United States (US).

This Privacy Policy explains how information about you is collected, used, and disclosed by the Shwachman-Diamond Syndrome Alliance (“SDS Alliance“ or “SDSA”). This Privacy Policy applies to information we collect when you use our website and other online services that link to this Privacy Policy (collectively, the “Site“) or when you otherwise interact with us.

We use GiveLively as our online donation platform to receive donations on our website, email, and social media campaigns, and for peer-to-peer campaigns. The Privacy Policy is available here:

If you are based in the UK or European Union, please see the “Additional information for Website Users in the UK and European Union (EU)” section below.

I. Modifications

We may change this Privacy Policy from time to time. If we make changes, we will notify you by revising the date at the top of the policy and, in some cases, we may provide you with additional notice (such as adding a statement to our homepage or sending you an email notification). We encourage you to review the Privacy Policy whenever you access the Site to stay informed about our information practices and the ways you can help protect your privacy.

II. Collection of Information

Information You Provide Us: We collect information you provide directly to us. For example, we collect information when you sign up to receive emails, make a donation, become a fundraiser, participate in any interactive features of the Site (including creating an account and submitting a request through our contact forms) or otherwise communicate with us. The types of information we may collect include your name, email address, postal address, phone number, fax number, credit card information and any other information you choose to provide.

Information We Collect Automatically When You Use the Site: When you access or use our Site, we automatically collect information about you using Google Analytics, including:

  • Log Information: We log information about your use of the Site, including the type of browser you use, access times, pages viewed, your IP address and the page you visited before navigating to our Site.

  • Device Information: We collect information about the computer or mobile device you use to access our Site, including the hardware model, operating system and version, unique device identifiers and mobile network information.

  • Information Collected by Cookies and Other Tracking Technologies: We use various technologies to collect information, and this may include sending cookies to your computer or mobile device. Cookies are small data files stored on your hard drive or in device memory that help us to improve our Site and your experience, see which areas and features of our Site are popular and count visits. We may also collect information using web beacons (also known as “tracking pixels”). Web beacons are electronic images that may be used in our Site or emails and help deliver cookies, count visits, understand usage and campaign effectiveness and determine whether an email has been opened and acted upon. For more information about cookies, and how to disable them, please see “Your Choices” below.

Information We Collect From Other Sources: We may also obtain information from other sources and combine that with information we collect through our Site. For example, if you interact with the Site through a social media site, we may have access to certain information from that site, such as your name, account information and friends lists, in accordance with the authorization procedures determined by such social media site.

III. Use of Information

We may use information about you for various purposes, including to:

  • Provide, maintain and improve our Site;

  • Send you technical notices, updates, security alerts and support and administrative messages;

  • Respond to your comments, questions and requests;

  • Process and administer donations that you make to us;

  • Communicate with you about services, offers, promotions, campaigns, and events offered by SDS Alliance and others, and provide news and information we think will be of interest to you;

  • Monitor and analyse trends, usage and activities in connection with our Site;

  • Administer your online account with us;

  • Personalise and improve the Site and provide advertisements, content or features that match user profiles or interests;

  • To comply with applicable laws and regulations;

  • Link or combine with information we get from others to help understand your needs and provide you with better service; and

  • Carry out any other purpose for which the information was collected.

IV. Sharing of Information

We may share information about you as follows or as otherwise described in this Privacy Policy:

  • With partners, vendors, consultants, and other service providers who need access to such information to carry out work on our behalf, for example, to help run our Site and IT systems, to send undertake online marketing and to send emails on our behalf, and to facilitate online payments (e.g. PayPal and Give Lively);

  • In response to a request for information if we believe disclosure is in accordance with any applicable law, regulation or legal process, or as otherwise required by any applicable law, rule, or regulation;

  • If we believe your actions are inconsistent with the spirit or language of our user agreements or policies, or to protect the rights, property, and safety of the SDS Alliance or others;

  • In connection with, or during negotiations of, any merger, sale of organizational assets, financing or acquisition of all or a portion of our organization to another entity; and

  • With your consent or at your direction, including if we notify you through our Site that the information you provide will be shared in a particular manner and you provide such information.

  • We may also share aggregated or de-identified information, which cannot reasonably be used to identify you.

In no instance will the SDS Alliance rent, sell or exchange (for any reasons other than those listed above) your data with other organizations.

Social Sharing Features: The Site may offer social sharing features and other integrated tools (such as the Facebook “Like” button), which let you share actions you take on our Site with other media, and vice versa. The use of such features enables the sharing of information with your friends or the public, depending on the settings you establish with the entity that provides the social sharing feature. For more information about the purpose and scope of data collection and processing in connection with social sharing features, please visit the privacy policies of the entities that provide these features.

Advertising and Analytics Site Provided by Others: We may allow others to serve advertisements on our behalf across the Internet and to provide analytics services. These entities may use cookies, web beacons, and other technologies to collect information about your use of the Site and other websites, including your IP address, web browser, pages viewed, time spent on pages, links clicked, and conversion information. This information may be used by the SDS Alliance and others to, among other things, analyze and track data, determine the popularity of certain content, deliver advertising and content targeted to your interests on our Site and other websites and better understand your online activity.

For more information about Internet-based ads, or to opt-out of having your web browsing information used for behavioral advertising purposes, please visit: and

V. Security

SDS Alliance takes reasonable measures to help protect information about you from loss, theft, misuse, and unauthorized access, disclosure, alteration, and destruction.

Please be aware that despite our best efforts, no data security measures can 100% guarantee security. We encourage you to review the privacy statements of websites you choose to link to from the Site so that you can understand how those sites collect, use, and share your information. The SDS Alliance is not responsible for the privacy statements or other content on sites outside of the Site.

VI. Your Choices

Your Information: You may ask us to update, correct or delete information about you at any time by emailing us with your request at, but note that we may retain certain information as required by law or for legitimate purposes related to our organization.

We may also retain cached or archived copies of information about you for a certain period of time.

Cookies: Most web browsers are set to accept cookies by default. If you prefer, you can usually choose to set your browser to remove or reject browser cookies. Removing or rejecting browser cookies does not necessarily affect third-party flash cookies used in connection with our Site. To delete or disable flash cookies please visit: Please note that if you choose to remove or reject cookies, this could affect the availability and functionality of our Site.

Promotional Communications: You may opt-out of receiving promotional emails or messages from the SDS Alliance at any time by following the instructions in those emails or messages, or by contacting us using the details below. If you opt-out, we may still send you non-promotional communications, such as those that are necessary in connection with our ongoing service relationship (if applicable).

VII. Donor Bill of Rights

The SDS Alliance strongly believes in the rights of donors and subscribes to the Donor Bill of Rights. This statement of rights was developed by the Association of Fundraising Professionals (AFP), the Association for Healthcare Philanthropy (AHP), the Council for Advancement and Support of Education (CASE), and the Giving Institute: Leading Consultants to Non-Profits.

“Philanthropy is based on voluntary action for the common good. It is a tradition of giving and sharing that is primary to the quality of life. To assure that philanthropy merits the respect and trust of the general public, and that donors and prospective donors can have full confidence in the nonprofit organizations and causes they are asked to support, we declare that all donors have these rights:

  1. To be informed of the organization's mission, of the way the organization intends to use donated resources, and of its capacity to use donations effectively for their intended purposes;

  2. To be informed of the identity of those serving on the organization's governing board, and to expect the board to exercise prudent judgment in its stewardship responsibilities;

  3. To have access to the organization's most recent financial statements;

  4. To be assured their gifts will be used for the purposes for which they were given;

  5. To receive appropriate acknowledgment and recognition;

  6. To be assured that information about their donation is handled with respect and with confidentiality to the extent provided by law;

  7. To expect that all relationships with individuals representing organizations of interest to the donor will be professional in nature;

  8. To be informed whether those seeking donations are volunteers, employees of the organization, or hired solicitors;

  9. To have the opportunity for their names to be deleted from mailing lists that an organization may intend to share*; and

  10. To feel free to ask questions when making a donation and to receive prompt, truthful, and forthright answers.”

VIII. Additional Information for Website Users in the UK and European Union (EU)

For the purposes of the EU’s General Data Protection Regulation (“GDPR”) the SDS Alliance is the data controller. This section of the privacy policy includes information that is specific to how we process the personal data of supporters and donors that are based in the UK and EU.

Our Legal basis for Using Data: Data controllers need a lawful basis to collect and use your personal data under EU data protection law. The law allows for six ways to process personal data (and additional ways for sensitive personal data). Three of these are relevant to the types of processing that the SDS Alliance carries out. This includes information that is processed on the basis of:

  • A person’s consent (for example to send you direct marketing by email);

  • Processing that is necessary for compliance with a legal obligation (for example to process a donation); and

  • SDS Alliance’s legitimate interests (please see below for more information).

Personal data may be legally collected and used if it is necessary for a legitimate interest of the organization using the data, as long as that interest is not overridden by the privacy rights of the individual whose data is being used. SDS Alliance’s legitimate interests include:

  • Charity governance, including delivery of our charitable purposes, statutory and financial reporting and other regulatory compliance purposes;

  • Administration and operational management, including responding to solicited enquires, providing information, research, events management, the administration of volunteers, and employment and recruitment requirements.

  • Fundraising and campaigning, including administering campaigns and donations, and sending direct marketing by post, sending thank you letters and maintaining communication suppressions.

If you would like to change our use of your personal data in this manner, please get in touch with us using the details in the “Contact Us” section below.

How Long We Retain Data: We will keep your personal data for no longer than is necessary for the purposes for which it is processed, in accordance with our internal policies. The length of time that data will be kept may depend on the reasons for which we are processing the data and on the law or regulations that the information falls under such as financial regulations, statutory limitation periods or any contractual obligation we might have. Subject to the above, we will typically store data relating to donors and supporters for 7 years after their last donation or interaction with us unless there is a justifiable reason to keep it for longer. Once the retention period has expired, the information will be confidentially disposed, permanently deleted, or in some cases archived.

If you request to receive no further contact from us, we will keep some basic information about you on our suppression list in order to avoid sending you unwanted materials in the future.

Transfers Outside of the European Economic Area (“EEA”): As SDS Alliance is based in the U.S. Any data that you provide to us via the Site or otherwise will be transferred to and held in the U.S.

Your Rights: You have a number of rights under EU data protection legislation. These include:

  • Right of Access: You have the right to know what information we hold about you and to ask, in writing, to see your records. We will supply any information you ask for that we hold about you as soon as possible, but this may take up to 30 days. We will not charge you for this. You will be asked for proof of identity as the person dealing with your request may not be the staff member you have met before. We need to be sure we are only releasing your personal data to you. This is called a data subject access and can be done by writing to us using the “Contact Us” details.

  • Right to be Informed: You have the right to be informed how your personal data will be used. This policy as well as any additional information or notice that is provided to you either at the time you provided your details, or otherwise, is intended to provide you with this information.

  • Right to Withdraw Consent: Where we process your data on the basis of your consent (for example, to send you marketing emails) you can withdraw that consent at any time. To do this, or to discuss this right further with us, please contact us using the details in the “Contact Us” section below.

  • Right to Object: You also have a right to object to us processing data where we are relying on it being within our legitimate interests to do so (for example, to send you direct marketing by post). To do this, or to discuss this right further with us, please contact us using the details in the “Contact Us” section below.

  • Right to Restrict Processing: In certain situations you have the right to ask for processing of your personal data to be restricted because there is some disagreement about its accuracy or legitimate usage.

  • Right of Erasure: In some cases, you have the right to be forgotten (i.e. to have your personal data deleted from our database). Where you have requested that we do not send you marketing materials we will need to keep some limited information in order to ensure that you are not contacted in the future.

  • Right of Rectification: If you believe our records are inaccurate you have the right to ask for those records concerning you to be updated. To update your records please get in touch with us using the details in the “Contact Us” section below.

  • Right to Data Portability: Where we are processing your personal data because you have given us your consent to do so, you have the right to request that the data is transferred from one service provider to another.

  • Rights Related to Automated Decision-Making: You have the right not to be subject to a decision based solely on automated processing of your personal information which produces legal or similarly significant effects on you, unless such a decision (a) is necessary to enter into/perform a contract between you and us/another organization, (b) is authorised by EU or Member State law to which the SDS Alliance is subject (as long as that law offers you sufficient protection); or (c) is based on your explicit consent.

If you would like to exercise any of these rights please get in touch with us using the details in the “Contact Us” section below. If you are unhappy with the way in which we have handled your personal data please contact us using the details below. You are also entitled to make a complaint to the data protection regulator within your EU member state, for example, the Information Commissioner’s Office in the UK.

IX. Contact Us

If you have any questions about this Privacy Policy, please contact us at

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