Privacy Policy

Last updated October 7, 2026

1. INTRODUCTION

Usher Syndrome Society (“Usher Syndrome Society,” “we,” “us,” or “our”) is a nonprofit organization registered in Massachusetts, United States, located at 1544 Central Ave, Needham, MA 02492.

We operate the website www.ushersyndromesociety.org (the “Site”) and related services (collectively, the “Services”).

The Usher Syndrome Society website provides information about Usher syndrome and the work of the Usher Syndrome Society, including funding research toward treatments and a cure, raising awareness, sharing films and stories, charitable fundraising, events and programs, and merchandise supporting our nonprofit mission.

This Privacy Policy explains how we collect, use, disclose, and protect personal information when you visit or interact with our Services, make a donation, register for an event or program, purchase merchandise, subscribe to communications, contact us, or otherwise provide information to us.

If you have questions about this Privacy Policy or our privacy practices, you may contact us at Usher Syndrome Society, 1544 Central Ave, Needham, MA 02492, United States; phone 781-838-0204; email [email protected].

2. INFORMATION WE COLLECT

We may collect personal information that you voluntarily provide to us when you make a donation, register for an event or program, purchase merchandise, subscribe to communications, complete a form, contact us, or otherwise interact with the Services.

• Name
• Email address
• Telephone number
• Mailing and billing address
• Communication preferences
• Donation, registration, or purchase information
• Information you voluntarily provide when communicating with us

We do not intentionally collect Social Security numbers, government identification numbers, biometric information, genetic information, or other sensitive personal information through our general website forms.

Payment information submitted in connection with donations or purchases may be processed by our third-party payment and fundraising service providers. We do not intend to directly store complete payment-card numbers through our website.

3. INFORMATION COLLECTED AUTOMATICALLY

When you visit the Site, certain technical information may be collected automatically. This may include information such as your Internet Protocol (IP) address, browser type, device type, operating system, referring pages, pages viewed, approximate visit times, and information about how visitors interact with the Site.

We use this information primarily to operate and secure the Site, understand how it is used, identify usage trends, and improve our Services.

4. HOW WE USE PERSONAL INFORMATION

• Process and acknowledge charitable donations
• Process merchandise purchases and related transactions
• Manage event and program registrations
• Provide information or services you request
• Respond to questions and communications
• Send administrative communications, receipts, confirmations, and other transactional information
• Send newsletters or other communications when you have elected to receive them
• Maintain donor and constituent records
• Understand how visitors use our Site
• Improve our website, programs, fundraising efforts, and communications
• Protect the security and integrity of our Services
• Detect or prevent fraud, misuse, or security incidents
• Comply with applicable legal, regulatory, accounting, and reporting requirements

We may also use information for other purposes with your consent or as otherwise permitted by law.

5. LEGAL BASES FOR PROCESSING

Where the European Economic Area (“EEA”), United Kingdom, or other applicable data-protection laws require us to identify a legal basis for processing personal information, we may rely on one or more of the following bases:

Consent. We may process information when you have given us consent, including when you choose to receive certain communications.

Performance of a contract. We may process information when necessary to fulfill a transaction or provide a service you have requested, such as processing a merchandise order or event registration.

Legitimate interests. We may process information when reasonably necessary for our legitimate nonprofit activities, such as operating and protecting our Site, maintaining appropriate organizational records, responding to inquiries, and understanding general website usage, provided those interests are not overridden by your rights.

Legal obligations. We may process information when necessary to comply with applicable laws, regulations, tax requirements, accounting obligations, or valid legal requests.

Where required, you may withdraw your consent at any time. Withdrawal of consent does not affect processing that occurred before consent was withdrawn.

6. DONATIONS, PURCHASES, AND PAYMENT PROCESSING

When you make a donation, register for certain events, or make a purchase, information associated with the transaction may be processed by third-party service providers that help us manage fundraising and payments.

We use Bloomerang for donor and constituent management and certain online forms. Information submitted through Bloomerang forms may be processed and stored by Bloomerang on our behalf in connection with those services.

We also use Stripe in connection with payment processing. Stripe may process payment and transaction information in accordance with its own privacy practices and applicable agreements.

We do not sell payment-card information and do not intend to directly store complete payment-card numbers through our website.

7. GOOGLE ANALYTICS

We use Google Analytics to help us understand how visitors use our Site. Google Analytics may collect technical and usage information associated with your browser or device and interactions with our Site.

We do not currently use Google Analytics advertising features such as remarketing, Google Display Network Impressions Reporting, or Google Analytics Demographics and Interests Reporting.

Information collected through Google Analytics is handled in accordance with Google’s applicable terms and privacy practices.

8. COOKIES AND SIMILAR TECHNOLOGIES

Our Site and third-party services used on our Site may use cookies or similar technologies to operate the Site, remember preferences, maintain security, and understand website usage.

Cookies are small data files stored on or accessed through your browser or device. Some cookies may be necessary for website functionality, while others may support analytics.

You can generally control cookies through your browser settings. Disabling certain cookies may affect the functionality of portions of the Site.

Where applicable law requires consent before non-essential cookies or similar technologies are used, we will seek such consent.

9. HOW WE DISCLOSE PERSONAL INFORMATION

We may disclose personal information to third parties that perform services on our behalf or assist us in operating our organization, including:

• Donor and constituent management providers
• Payment processors
• Data analytics providers
• Website hosting and technology providers
• Service providers supporting events, purchases, or organizational operations

These providers may access personal information only as appropriate to perform the relevant services or as otherwise permitted by applicable law and their agreements with us.

We may also disclose information when we reasonably believe disclosure is necessary to comply with law, legal process, governmental requests, protect our rights or the rights and safety of others, investigate fraud or security incidents, or protect our Services.

We do not sell personal information for money. We do not disclose personal information to third parties for their own direct marketing purposes.

10. THIRD-PARTY WEBSITES AND SERVICES

Our Site may contain links to websites or services operated by third parties, including research institutions, clinical-trial resources, nonprofit organizations, payment providers, event platforms, and other external resources.

We are not responsible for the privacy, security, or information practices of third-party websites or services. We encourage you to review their privacy policies before providing personal information.

The inclusion of a third-party link does not necessarily constitute an endorsement by the Usher Syndrome Society.

11. DATA RETENTION

We retain personal information for as long as reasonably necessary to fulfill the purposes for which it was collected, maintain appropriate donor, transaction, tax, accounting, and organizational records, comply with legal obligations, resolve disputes, and enforce our agreements.

Different categories of information may be retained for different periods depending on the nature of the information and the reason it was collected.

When personal information is no longer reasonably necessary for these purposes, we may delete or anonymize it, subject to applicable legal and operational requirements.

12. DATA SECURITY

We use reasonable administrative, technical, and organizational safeguards designed to protect personal information. We also rely on third-party service providers to maintain security measures appropriate to the information they process on our behalf.

However, no method of transmitting information over the Internet or storing information electronically can be guaranteed to be completely secure. We therefore cannot guarantee the absolute security of personal information.

13. INTERNATIONAL DATA TRANSFERS

The Usher Syndrome Society is based in the United States. If you access our Services from outside the United States, your personal information may be transferred to, stored in, or processed in the United States or other jurisdictions in which our service providers operate.

Those jurisdictions may have data-protection laws that differ from those in your country.

Where applicable law requires an approved mechanism for an international transfer of personal information, we or our service providers may rely on appropriate safeguards permitted by applicable law.

14. PRIVACY RIGHTS

Depending on where you live and subject to applicable law, you may have rights concerning your personal information, including the right to:

• Request access to personal information we maintain about you
• Request correction of inaccurate personal information
• Request deletion of certain personal information
• Obtain information about how we collect, use, or disclose personal information
• Withdraw consent where processing is based on consent
• Object to or request restriction of certain processing
• Request portability of certain personal information
• Appeal certain decisions regarding a privacy request where applicable law provides that right
• Opt out of certain communications

These rights are not absolute and may be subject to exceptions under applicable law.

To exercise an applicable privacy right, contact us at [email protected]. We may need to verify your identity before fulfilling a request. We will respond in accordance with applicable law.

If applicable law provides you with a right to appeal our decision regarding a privacy request, you may submit the appeal to [email protected].

15. UNITED STATES PRIVACY RIGHTS

Residents of certain U.S. states may have additional privacy rights under applicable state law.

Depending on the law and whether it applies to the Usher Syndrome Society, these may include rights to know or access personal information, correct inaccurate information, request deletion, obtain a portable copy of certain information, and opt out of certain forms of data processing.

We do not sell personal information for monetary consideration. We do not use personal information to create profiles that produce legal or similarly significant effects concerning individuals.

Requests regarding applicable state privacy rights may be submitted to [email protected].

16. CALIFORNIA RESIDENTS

California residents may have additional rights regarding personal information under applicable California privacy laws.

During the preceding twelve months, we may have collected categories of personal information including identifiers, such as names, email addresses, mailing addresses, telephone numbers, and Internet or similar network activity, as well as transaction or purchasing information where a person makes a donation, registers for an event, or purchases merchandise.

We may disclose these categories of information to service providers or other entities as necessary to operate our organization and provide the Services described in this Privacy Policy.

We do not sell personal information for monetary consideration. California residents may contact us at [email protected] regarding applicable privacy rights.

17. EEA AND UK PRIVACY RIGHTS

If you are located in the EEA or United Kingdom and applicable data-protection law applies to our processing of your personal information, you may have rights that include requesting access, correction, erasure, restriction of processing, data portability, or objection to certain processing.

Where processing is based on consent, you may withdraw that consent at any time, subject to applicable law.

You may also have the right to lodge a complaint with the data-protection authority in the country where you live or work.

To exercise an applicable right, contact [email protected].

18. COMMUNICATION PREFERENCES

If you receive promotional or informational email communications from us, you may unsubscribe by using the unsubscribe or preference-management link included in the communication or by contacting us.

Even if you opt out of promotional communications, we may continue to send non-promotional communications when appropriate, such as donation acknowledgments, receipts, event information, purchase confirmations, or responses to your inquiries.

19. CHILDREN’S PRIVACY

Our Services are not specifically directed to children under the age of 13, and we do not knowingly collect personal information online from children under 13 without appropriate authorization where required by law.

If we learn that we have collected personal information from a child in circumstances requiring parental consent without obtaining that consent, we will take appropriate steps to address the information.

Parents or guardians who believe a child has provided personal information to us may contact [email protected].

20. CHANGES TO THIS PRIVACY POLICY

We may update this Privacy Policy from time to time to reflect changes to our practices, technologies, legal requirements, or Services.

When we update this Privacy Policy, we will revise the “Last updated” date at the top of this page. We encourage you to review this Privacy Policy periodically.

21. CONTACT US

If you have questions about this Privacy Policy, our privacy practices, or personal information we maintain about you, or if you wish to exercise an applicable privacy right, contact us at:

Usher Syndrome Society

1544 Central Ave

Needham, MA 02492

United States

 

Email: [email protected]

Phone: 781-838-0204

Website: www.ushersyndromesociety.org