Privacy | SMC1A Foundation

Privacy Policy

This is the privacy policy for the SMC1A Foundation.

This website is the property of the SMC1A Foundation. We take the privacy of all visitors to this website very seriously and therefore set out in this privacy policy our position regarding certain privacy matters of this website.

This policy covers all data that is shared by a visitor with us whether directly via smc1a-epilepsy.org, our social media channels, or via email. This policy provides an explanation as to what happens to any personal data that you share with us, or that we collect from you either directly or non directly via this website, our social media channels or via email.

Information we collect

While using our site or related social media pages, we may ask you to provide us with certain personal data that can be used to contact or identify you (“Personal Data”). Personal Data may include, but is not limited to:

Email address
First name and last name
Pictures or videos you submit
Geographical information about where you live
Phone number and address
Name of individual diagnosed with a SMC1A variation
Info on gender
Patient specific disease symptoms or phenotype
Health related information

We may collect such data through Google Forms, Survey Monkey, Mail Chimp, Question Pro or via other Data Collection softwares and platforms. Our surveys and questionnaires are mostly designed to be anonymous. However, respondents should be aware that when responding to surveys, they could be disclosing information that could make them personally identifiable to the SMC1A Foundation. Respondents to surveys should be aware that they alone are responsible for the content of their responses.

Please note – our Family Contact Registry, SMC1A Community Survey, and SMC1A Natural History are not anonymous. We are specifically collecting information about our patient families so that we can better serve each family and the community as a whole. This information is for our internal purposes only and will not be shared with outside parties without your consent. Some data in these Registries may be collected or verified via direct individual Family reach out, direct questionnaires, Facebook Group Q & A, Facebook Group polls, or Group Member Questions, or other.

When we share data from SMC1A Community Survey, Family Contact Registry, CoRDS Patient Registry, SMC1A Natural History, or from other surveys, the data is always de-identified.

We may direct you to our partner organizations, such as Rare Epilepsy Network, or Stanford CoRDS, Invitae (Ciitizen), or others, so that they may collect data for their Registry, or other purposes. This is done only in a way that you do have a clear understanding of this action. Should you choose to participate in that Registry, you will be directed to an outside link. Please note that we do not have any control over the data collected on our partners websites.

Payment Providers:

We may provide paid products and/or services within the site. When we do, we use third-party services for payment processing (e.g. payment processors). We will not store or collect your payment card details. That information is provided directly to our third-party payment processors whoses use of your personal information is governed by their own privacy notice. The payment processors we work with adhere to the standards set by PCI-DSS as managed by the PCI Security Standards Council, which is a joint effort of brands like Visa, Mastercard, American Express and Discover. PCI-DSS requirements help ensure the secure handling of payment information.

Third party links

We may have links on our site to other sites that we do not operate. If you click on a third-party link, you will be taken directly to that site which is governed by its own privacy notice. It is your responsibility to read that privacy notice. We do not control that site and assume no responsibility for the content, policies or its practices.

Choices and Individual Rights

We aim to take reasonable steps, so you can correct, amend, delete or limit the use of your Personal Data.

We outline your choices below:

E-mail. If you do not wish to receive emails from us, you may opt out at any time by unsubscribing directly via the link provided in your email, or sending us an email to info@smc1a-epilepsy.org

Your rights under certain circumstances. To initiate any of these actions please contact us at info@smc1a-epilepsy.org.

To access and receive a copy of the Personal Data we hold about you.
To rectify any Personal Data held about you that is inaccurate
To request the deletion of Personal Data held about you

You have the right to data portability for the information you have provided to us. You can request to obtain a copy of this information in a commonly used electronic format so that you can manage and move it. We will need to verify your identity before being able to respond to such requests.

You can request to delete your data from one, any, or all of our registries at anytime. Please note that in some cases, we may not be able to remove your personal information (e.g. it is included in already published article), in which case we will let you know if we are unable to do so and why.

Security

We use reasonable administrative, logical, physical and managerial measures to safeguard your personal information against loss, theft and unauthorized access, use, and modification. Unfortunately, no measures can be guaranteed to provide 100% security. Accordingly, we cannot guarantee the security of your information and do not take responsibility of any theft or unauthorized use of images or data from our website.

Data Retention

SMC1A Foundation will retain your Personal Data only for as long as is necessary for the purposes set out in this Privacy Notice. We will retain and use your Personal Data to the extent necessary to comply with our legal obligations (for example, if we are required to retain your data to comply with applicable laws), resolve disputes, and enforce our legal agreements and policies.

Our Policy on Children

Our site is not directed to children under 16. If you learn that your minor child has provided us with personal information without your consent, please contact us.

Contacting us

We welcome any queries, comments or requests you may have regarding this policy please do not hesitate to contact us at info@smc1a-epilepsy.org

SMC1A Foundation is recognized as a non-profit organization. We are not doctors or medical providers and the information on this website should not be replaced with the information you receive from your medical team.

The trademarks, logos, and service marks displayed on this website, including the SMC1A Foundation logo, are the property of SMC1A Foundation.