Privacy Policy for EU/EAA and UK Citizens
Our Contact Information (Data Controller)
Global Genes
28 Argonaut, Suite 150
Aliso Viejo, CA
92656
United States
Telephone: (+1) 949-248-RARE (7273)
Company Email: [email protected]
What we do with your personal data
We process personal data only for the purpose for which they are collected. The purpose is dependent on whether you use only our website, or additionally, our services. If you use our services you are required to register and we collect your personal data. We use this personal data for the provision of the service or the performance of the contract. We may use your personal data for other similar purposes, including marketing and communications, but that will only occur in the case we have your consent or another legal justification for doing so.
| From our Patients we process and retain personal data for the following purposes and periods, with the applicable legal basis. | ||
| Processing purpose | Legal basis | Retention period |
| Communications, marketing and intelligence | 6(1)(f) – it’s in our legitimate interest (Communications, marketing and intelligence) | Until consent withdrawn |
| From our Researchers, Scientists and Academics we process and retain personal data for the following purposes and periods, with the applicable legal basis. | ||
| Processing purpose | Legal basis | Retention period |
| Communications, marketing and intelligence | 6(1)(f) – it’s in our legitimate interest (Communications, marketing and intelligence) | Until consent withdrawn |
| From our DCP Participants we process and retain personal data for the following purposes and periods, with the applicable legal basis. | ||
| Processing purpose | Legal basis | Retention period |
| to provide Services related to our mission to accelerate diagnosis, disease understanding, and development of future treatments and cures across rare diseases | 6(1)(a) – we have the data subject’s consent | Until consent withdrawn |
What personal data do we collect?
The personal data we collect depends on whether you just visit our website or use our services. If you visit our website, you do not need to provide us with any personal data. However, your browser transmits some data automatically, such as the date and time of retrieval of one of our web pages, your browser type and settings, your operating system, the last web page you visited, the data transmitted and the access status, and your IP address.
If you use our services, personal data is required to fulfill the requirements of a contractual or service relationship, which may exist between you and our organization.
We collect:
Age
Birthdate
Ethnicity
Gender
Disease of Interest
Diagnosis
Family
Location Information
Name
Telephone contact details
Digital Images
Email, Social Networks
We collect special category personal data and do so under the following legal basis:
- Genetic data
- Health
- 9(2)(a) – Explicit consent of the data subject
- Racial or Ethnic Origin
- 9(2)(a) – Explicit consent of the data subject
- Sex life or Sexual orientation
- 9(2)(a) – Explicit consent of the data subject
How we use your personal data and your rights
- When you visit the RARE-X DCP and use our Services, your personal data is processed on our behalf or jointly controlled by us and joint controllers.
- Your personal data is used by us to provide Services related to our mission to accelerate diagnosis, disease understanding, and development of future treatments and cures across rare diseases.
Global Genes Joint Controllers and Data Processors
- Global Genes acts as a Data Controller with respect to your personal data.
- Depending on what you agree to in the Informed Consent Forms, your data may be processed on our behalf by our Data Processors (Service Providers) that include:
- Across Healthcare
- The Broad Institute, Inc.
- SalesForce
- Happy Fox
- Hubspot
- MailChimp
- GMass
- Zoom
- Higher Logic
- Forms Assembly
- Amazon
- Cvent
- If you are a participant or non-participant in the RARE-X Data Collection Program, depending on what you agree to in the Informed Consent Forms, your data may be shared with Joint Controllers that include:
- Patient Advocacy Groups (PAG)
- Institutions that perform approved research
- IRB approved research projects
Data Transfers
Some of your data is shared with our data processors and joint controllers that are located outside of the European Economic Area (EEA) and UK. If we transfer your personal data outside of the EEA and UK, your data will be protected as required by the GDPR and UK GDPR. Our protection measures include technical safeguards and use of the EU Standard Data Protection Clauses with the UK addendum.
Your Rights
- You have several rights including the right of access, rectification, erasure (right to be forgotten), restriction of processing, to data portability, to object to automated individual decision-making.
- We do not perform any automated decision making using your personal data
- If you are a participant in the RARE-X Data Collection Program, please see our RARE-X Data Collection Program Privacy Policy to learn more about managing your rights, including limiting the sharing of your personal data and deleting your account.
- To exercise your rights, you can complete the online form at https://globalgenes.org/privacy-request or by calling us at +1 (716) 427-2739 or email us at [email protected].
Our Supervisory Authority
- You have the right to lodge a complaint with any Supervisory Authority. See our Supervisory Authority contact details below.
- Data Protection Commissioner
Canal House
Station Road
Ireland
[email protected]
+353 57 868 4800
www.dataprotection.ie
Our Data Protection Officer
- Our Data Protection Officer can be contacted as follows:
Barry Weber
28 Argonaut, Suite 150
Aliso Viejo, CA 92656
Email: [email protected]
Our EU and UK RepresentativesIf you are in the EU/EAA or UK, you may also reach us through DataRep, Global Genes’ EU/UK Data Protection Representative. Information about how to do so can be found at https://globalgenes.org/data-representative.