Privacy Policy updated June 12, 2023, and effective immediately

Welcome to the Periodic Paralysis International, website, and related social media groups. The Periodic Paralysis International (“PPI” or “We” or “Us” or “Our”)wants to share with you all the ways that we use and protect the important information you provide to us. We collect information in order to further our mission to improve the quality of life of children and adults affected by the Primary Periodic Paralyses. When we collect information, that allows us to help you on a more personal level. We can better respond to your questions, understand your needs, and quickly provide you with relevant information. We can also compare your information with that of others to identify trends.  By accessing and/or using our services, you are agreeing to the collection and use of your information in accordance with this policy. The information below details our policy, procedures, and practices, as well as how you can opt out from sharing your information with us. 

What information we collect

We collect a variety of personally identifying and non-identifying data about our PPI members, website users, donors, and others who interact with us and use our services.  

  • You may browse our website without identifying yourself or providing any personally identifiable information. However, we do record certain non-identifying site-usage data, such as your IP address, and your number of visits to our website pages.
  • Data that may personally identify you, including your name, postal address, e-mail address, telephone number, cookies, and usage data.
  • If you elect to donate, register for an event, or sign up for any of our publications, you will be asked to provide personal information such as your name, address, city, state, zip, phone number, and email address.
  • The PPI keeps all names, addresses, and all other personal information supplied by participants of our website strictly confidential. 
  • The PPI discourages sharing of personal information in public online forums. Please keep in mind, however, that whenever you voluntarily disclose personal information on message boards, through email, or in chat areas, that information may be collected and used by others. 
  • We may receive confirmation via HTML code when you open an email from us, which helps us measure our reach and ensure reduce or eliminate duplicate e-mails. 
  • If you no longer wish to receive e-mails from us, please unsubscribe or change your profile settings 
  • Records and copies of your correspondence (including email addresses) if you contact us.
  • Your responses to surveys that we might ask you to complete for research and development purposes.

You also may provide information to be published or displayed (hereinafter, “Posted”) on public areas of the Sites or transmitted to other users of the Sites or third parties (collectively, “User Contributions”). Your User Contributions are Posted on and transmitted to others at your own risk. Although we limit access to certain pages, please be aware that no security measures are perfect or impenetrable. Additionally, we cannot control the actions of other users of the Sites with whom you may choose to share your User Contributions. Therefore, we cannot and do not guarantee that your User Contributions will not be viewed by unauthorized persons.

We do not knowingly collect personal identifiable information from minors under 18 years of age. If you are under 18 years of age, do not submit any information on our sites or through any of their features, including your name, address, telephone number, email addresses or any screen name or username you may use. If we learn we have collected or received Personal Data from a user under age 18 without verification of guardian or parental consent, we will delete that information. If you believe we might have any information from a user under age 18, please contact us by email at: or via our website by using the Contact Form located under the “About Us” section.

Use of data

The Periodic Paralysis International utilizes the collected data for various purposes, including:

  • Providing customer support, responding to your questions or other requests
  • Providing, maintaining, and notifying you about changes to our services
  • Operating, evaluating, and Improving services to you
  • Monitoring usage of our services
  • Ability to better address technical issues
  • Accumulating and reporting aggregate, statistical information in connection with our services and user activity
  • For research purposes, marketing/promotional purposes
  • Providing you with news, general information, special offers and survey participation notifications

Disclosure of your information

Our sponsors and advertisers have agreed that they will not collect any personally identifiable information from our Site visitors while using our Sites; however, we do not control the use of cookies provided by other third parties, nor do we manage the information collected by other third parties. These third parties may aggregate the information they collect with information from their other customers for their own purposes and in accordance with their own respective privacy policies.

Please be aware that there may be a circumstance where the Periodic Paralysis International would be required to disclose your personal data outside the purposes related to the PPI.

  • If mandated by law or legal process including in response to a request from a public authority such as a government agency or court of law (i.e. warrant, court order, subpoena). This may include responding to legal requests from jurisdictions outside of the United Sates when we have a good-faith belief that the response is required by law in that jurisdiction and is consistent with internationally recognized standards.
  • If we believe disclosure is necessary or appropriate to protect the rights, property, or safety of the PPI, its board members and/or any of the PPI’s members and affiliates.
  • When we have a good-faith belief it is necessary to: detect, prevent and/or address fraud, unauthorized use of our services, products or website content, violations of our terms or policies, or other harmful or illegal activity.

Choices about how we use and disclose your information

We strive to provide you with choices regarding the Personal Data you provide us with. We have created or you have available mechanisms to provide you with control over your Personal Data:

  • Cookie Settings. You can set your browser or operating system to refuse all or some cookies or to alert you when cookies are being sent. If you disable or refuse cookies, please note that some parts of our Sites may then be inaccessible or not function properly.
  • Email Communications. If you do not wish to have your email address used by us to promote upcoming events, surveys, services, or other email communications, you can opt-out at any time by clicking the unsubscribe link at the bottom of any email you receive from us or use the Contact Form under the “About Us” section on the website.

Data retention

The Personal Data you provide to the Periodic Paralysis International will be retained only as long as necessary for the purposes specified in this Privacy Policy. We will keep and utilize your Personal Data to the extent required to fulfill our legal obligations, such as complying with applicable laws, resolving disputes, and enforcing our legal agreements and policies.

Additionally, Periodic Paralysis International will preserve usage data for purpose of internal analysis. Typically, this data is retrained for a shorter duration, unless it is utilized to enhance the security, improve the functionality of our service., or we have a legal obligation to retain this data for longer periods.

Protection of data

The protection of your data is very important to us. However, regardless of our efforts, the network, and the device you use to access our services, it is possible that third parties my unlawfully intercept or access transmissions or private communications. No data transmission over the internet is 100% secure from intrusion.

Users in the European Economic Area (EEA), United Kingdom, and Switzerland

If you are a resident of the EEA, the United Kingdom, or Switzerland, the following information applies with respect to personal data collected through your use of our Site.

Purposes of processing and legal basis for processing: As explained above, we process personal data in various ways depending upon your use of the services. We process personal data on the following legal bases: (1) with your consent; (2) as necessary to provide the services; (3) to comply with our legal obligations; and (4) as necessary for our legitimate interests in providing the services where those interests do not override your fundamental rights and freedoms related to data privacy.

Transfers: Personal data we collect may be transferred to, and stored and processed in, the United States or any other country in which we or our affiliates or processors maintain facilities. We will ensure that transfers of personal data to a country or an international organization outside the EEA, the United Kingdom, or Switzerland are subject to appropriate safeguards.

Your rights: You are entitled to the rights under Chapter III of the EU General Data Protection Regulation, the United Kingdom General Data Protection Regulations and Data Protection Act 2018, or Section 2 of the Swiss Federal Act on Data Protection with respect to the processing of your personal data, which include the right to access and rectify and to request erasure of personal data. In order to verify your identity, we may require you to provide us with personal information prior to accessing any records containing information about you. To exercise these rights, please contact us at or use the Contact Form located under the “About Us” section on our website.  

Links to other websites or social media

Our sites and/or services may link to other websites that have their own privacy policies. Be sure to review the privacy policy on the site you are visiting. The Periodic Paralysis International, assumes no responsibility for or control over the content, privacy polices or practices of any third party sites or services.

Privacy Policy updates

Our Privacy Policy may undergo updates periodically. We recommend reviewing this Privacy Policy regularly for any changes. If we make any significant changes to this policy, we will post a prominent message on our websites. 

How to contact us with questions

If you have any questions about our privacy practices, concerns regarding use of personal data, or other questions related to the terms or conditions of this privacy policy, please feel free to contact us at or use the Contact Form located under the “About Us” section on our website.