Privacy Policy

Our Privacy Policy 

PWSA | USA, short for Prader-Willi Syndrome Association | USA, is dedicated to improving the lives of individuals affected by Prader-Willi Syndrome (PWS) through research, support, education, and advocacy. We are a not-for-profit organization that serves as a comprehensive resource for individuals with PWS, their families, and the medical community. At PWSA | USA, we understand the importance of privacy and are committed to protecting the personal information of our visitors, members, and supporters. This Privacy Policy outlines the types of personal data we collect, why we collect it, and how it is used and protected. Our mission is to enhance the quality of life and empower those affected by Prader-Willi Syndrome. As part of this mission, we provide a range of services including support for families and individuals, educational materials, advocacy efforts, and promotion of research to better understand and manage PWS.

Your trust is important to us, and we are dedicated to safeguarding your personal information in alignment with the highest standards of privacy and data protection.

Collection and Use of Personal Data

At PWSA | USA, we are committed to safeguarding your privacy. This section explains the types of personal data we collect from you and the reasons for collecting it.

1. Comments: When visitors leave comments on our site, we collect the data shown in the comments form. This includes your name, email address, and the comment itself. Additionally, we collect your IP address and browser user agent string to help with spam detection. This information is used to facilitate conversation, manage user interactions on our site, and ensure a safe online environment for all users.

2. Media: If you upload images to the website, avoid including embedded location data (EXIF GPS) as other visitors can download and extract any location data from these images. This measure is to protect your privacy and the privacy of others.

3. Contact Forms: If you use our contact forms, we collect the information you provide, which may include your name, email address, and any other information you choose to include in your message. This information is used to respond to your inquiries and provide assistance as needed.

4. Cookies: We use cookies to enhance your experience on our site. Cookies are small data files stored on your device. They help us remember your preferences and understand how you interact with our website. For instance, if you leave a comment, you may opt-in to save your name, email, and website in cookies for convenience, so you don’t have to fill in your details again when leaving another comment. These cookies last for one year. We also use cookies for essential functions like authentication and site analytics.

5. Embedded Content from Other Websites: Articles on this site may include embedded content (e.g., videos, images, articles). Embedded content from other websites behaves exactly as if you have visited the other website. These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with the embedded content.

6. Analytics: We collect anonymized data regarding website traffic and user interactions with our site. This data helps us understand how visitors use our website and improve their experience. This data is processed in a way that does not identify anyone.

Our goal in collecting this data is to better understand the needs of our community and provide a more personalized and effective experience. We do not collect more information than is necessary and we ensure that it is used only for the purposes described here.

Data Sharing and Disclosure

At PWSA | USA, we recognize the importance of your personal data and are committed to maintaining its confidentiality. This section outlines the circumstances under which your data may be shared with third parties.

1. Service Providers: We engage with various service providers to perform functions and provide services to us, including hosting and maintenance, analysis, marketing, payment processing, and others. These service providers have access to your personal data only to perform these tasks on our behalf and are obligated not to disclose or use it for any other purpose.

2. Affiliates and Partners: In some cases, we may share your data with our affiliates or partners for purposes consistent with this Privacy Policy, such as collaborating on research, outreach programs, or educational initiatives related to Prader-Willi Syndrome. We only share what is necessary and always under strict confidentiality agreements.

3. Anonymized Data: We may share aggregated or anonymized information that does not directly identify you with entities like our research partners or public health organizations. This data is used for research, statistical analysis, and policy development related to Prader-Willi syndrome.

It is our policy to only share the minimum amount of data necessary and to ensure that your data is treated securely and in accordance with this Privacy Policy. We do not sell or rent your personal data to third parties for their marketing purposes without your explicit consent.

What Rights You Have Over Your Data

If you have an account on this site, or have left comments, you are entitled to certain rights regarding your personal data:

1. Data Access: You can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. This enables you to receive a copy of the data we hold about you and to check that we are lawfully processing it.

2. How You Can Request to Have Your Data Deleted: You can also request that we erase any personal data we hold about you. This includes data that you no longer wish us to hold, data that is being processed unlawfully, or data that must be erased to comply with legal obligations. To request data deletion, please contact us at info@pwsausa.org. Provide sufficient information to allow us to identify your account and verify your identity. We will respond to your request within 30 days and inform you of the action taken. Please note that the right to erasure does not include any data we are obliged to keep for administrative, legal, or security purposes.

3. Data Retention: We retain personal data only for as long as necessary to fulfill the purposes for which it was collected, including for the purposes of satisfying any legal, accounting, or reporting requirements. After this period, your personal data will be irreversibly destroyed. Any data that we are required by law to retain will be maintained in compliance with applicable laws.

4. Limitations and Exceptions: Please note that these requests may be limited in certain cases, for example, if fulfilling your request would reveal personal data about another person, or if you ask us to delete data which we are required by law to keep or have compelling legitimate interests in keeping.

Changes to This Privacy Policy

PWSA | USA reserves the right to update or modify this Privacy Policy at any time and for any reason. We will notify you of any significant changes to our Privacy Policy by posting a notice on our website or by sending you a direct communication, as appropriate. We encourage you to periodically review this page for the latest information on our privacy practices.

Minor changes or clarifications will take effect immediately upon posting on the website. Significant changes will take effect 30 days after their posting. Your continued use of our website and services following the posting of changes constitutes your acceptance of such changes.