Rare Genomics Privacy Statement

May 1, 2019

This privacy statement outlines the information that Rare Genomics Institute (“Rare Genomics”) collects from individuals, how we use the information, and instances where information may be shared with third parties.

Rare Genomics is a U.S. based non-profit organization that collects, processes, stores, discloses and disposes of information in accordance with applicable U.S. law.

What personal information does Rare Genomics collect?

Most of the information we receive comes directly from the patient or guardian. The types of information we collect falls into three categories; contact information, demographic information, and medical information (this includes genetic information). Additionally, we collect information through cookies. Please see our cookie notice for further information

A prospective patient or their guardian will begin by completing the Rare Genomics Institute Patient Application Form and/or other, similar documents. We request contact, demographic and/or general medical information to help determine if we can assist the patient. In some cases, this information is shared with professionals working with RG for the purposes of understanding cases, designing studies, and other uses related to the patients. With the patient and/or their guardian’s permission, we may collect medical records and genetic sequencing files from external applications, such as Patient Knows Best (PKB), as necessary. Medical and/or genomic sequencing information may be released to and collected by Rare Genomics through the Authorization for Release of Information form. As the patient proceeds through our services further information will be collected through communications with the patient or guardian, and any third parties that have been engaged to assist the patient. Typically, this will include medical (including genetic) information.

We also provide a monthly newsletter and other communications. But these communications require separate sign ups. Also, we operate a social network called RareShare that has its own separate sign up, terms of service and privacy policy.

For what purposes does Rare Genomics use personal information?

The key purpose of collecting information is to assist the patient with our various services. These services include helping the patient through education, advocacy, fundraising, consulting, research and access to / coordination of genomic testing.

Who does Rare Genomics share my information with?

Rare Genomics may share your information with general service providers of Rare Genomics as necessary for IT, operational and/or security purposes. Also, Rare Genomics may share your information as necessary by applicable legal or regulatory process.

If a patient elects to use RG Patient Research Services, Rare Genomics may share the patient’s information (including medical records and/or genomic sequencing information) with employees and volunteers within the organization, along with collaborators and service providers outside the organization for the specific purpose of understanding the individual patient’s case.

Rare Genomics will not share your information for broader research or charitable purposes, or commercial purposes, without your express permission to do so through an informed consent form. It is important to note that this additional consent is not required to receive our help and can be withdrawn at any time; however, it is important to understand that it may not be possible to retrieve and/or delete any information already shared.

Do you rely on consent to use my information?

The patient or guardian provides consent when they use our service. The patient or guardian may withdraw from our program and withdraw their consent to use their data at any time. This can be done by contacting their Patient Advocate (if assigned) or using the contact us section of our website.

How long do you hold my information?

We hold information for as long as that data is needed to perform our services and/or research. When determining how long to retain patient information we consider the following factors:

  • Are we currently assisting the patient?

  • Is the patient likely to contact us in the future?

  • Do we have consent to share patient information?

  • Is there a legal requirement to keep the data?

How can I review, update, or delete information about me?

To assist the patient, we provide the following options:

  • The patient or guardian may request a copy of the information held by RG.

  • The patient or guardian may update the information held by RG.

  • The patient or guardian may ask for the information held by RG to be deleted.

This can be done by contacting the Patient Advocate (if assigned) or using the contact us section of our website.

Further Questions

If you have any further question regarding the processing of patient information, please use the contact us section of our website.