Last Updated: March 25, 2025
This Consumer Health Data Privacy Notice (“Notice”) supplements our Privacy Notice, which explains the personal data we may collect, use, store or otherwise process when you visit one of our website(s), interact with us online or through email, participate in programs or services operated by us, or engage in other business interactions with us. A limited amount of the personal data we collect could constitute consumer health personal data under U.S. state consumer health privacy laws, such as Washington and Nevada.
This Notice applies to consumer health data, as that term is defined in applicable U.S. state laws, and describes the following:
- The consumer health data we may collect
- Sources from which the data may be collected
- How the data will be used
- How we may share the data
- Your rights relative to your consumer health data
- How to exercise your rights
Categories of Consumer Health Data We May Collect
Consumer health data is any data that is linked or reasonably linkable to a specific individual and that identifies that individual's past, present, or future physical or mental health status that we collect or control the collection of. We collect and use different types of consumer health data from and about you, including information about:
- Your health conditions, treatment, diseases, or diagnoses
- Lab or testing results
- Use of prescribed treatments or medications
- Health insurance information
- Other information that may be used to infer or derive data related to the above or other health information
Sources from Which We May Collect Consumer Health Data
- Directly from individuals and their caregivers and family members
- Through cookies/tracking technologies on our websites or social media
- From third parties, including healthcare professionals
- Other third-party sources, such as data brokers, who may provide us with information about consumers that may be interested in our products or services
- Our business and marketing partners, who may provide us with information about consumers who are viewing our content across other websites or applications, purchasing our products, or interacting with our promotions, benefits, or programs
How We Use Consumer Health Data
Where permitted by law, we may use Consumer Health Data for purposes further described in our Privacy Notice. These uses include:
- To provide products, services and/or information as requested
- To send you marketing information, product related information, communications and recommendations on our products, services and events and relevant disease areas regarding neurology and neurodegenerative diseases
- To verify your identity, thus securing your personal data, when you communicate with us
- To perform market research, registry and real world evidence studies, define new target populations and/or indications and improve patients’ health conditions and quality of life
- To use your recorded voice and/or image for stakeholder communications or educational disease awareness purposes (with your express consent)
- To analyze the use of our products and services
- To comply with our regulatory obligations to health authorities, including reporting adverse events and product quality complaints
How We May Disclose Consumer Health Data
We do not sell your consumer health data. We may disclose any of the consumer health data categories listed above to processors, service providers, and contractors that help us provide products and services to you and to our affiliates, including Amylyx Pharmaceuticals EMEA BV. We instruct these affiliates, processors, service providers, and contractors to only use consumer health data as permitted by our contracts with them and consistent with applicable law.
We may also disclose consumer health data as permitted by applicable law, including:
- With your consent
- To prevent, detect, protect from, or respond to security incidents, identity theft, fraud, harassment, or malicious or deceptive activities
- To a third party acquiring our assets if we sell our business or otherwise are part of a merger, acquisition, bankruptcy, or other transaction involving a third party taking control of our assets or business
- To investigate, report, or take legal action to protect our rights, property, and safety and the rights, property, and safety of others
- To protect your or others' vital interests, including health and safety
Your Consumer Health Data Privacy Rights
If you are a resident of Washington or another state or jurisdiction which affords you rights relative to your consumer health data, you have the right to:
- Request confirmation that we collect, share, or sell your consumer health data
- Request access to your consumer health data that we have collected or control, including:
- a list of all third parties and affiliates that we have shared your consumer health data with; and
- the email addresses or other online method to contact those third parties and affiliates
- Withdraw your consent for our collection and sharing of your consumer health data
- Request that we delete your consumer health data
How to Exercise Your Rights
If you have general queries, concerns or wish to raise a complaint about how personal data is used by Amylyx, or if you wish to exercise any of your rights, you can contact the data protection officer appointed by Amylyx at privacy@amylyx.com or Amylyx Pharmaceuticals, Inc., 43 Thorndike Street, Cambridge, MA 02412, or by calling 877-902-7726.