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May 17, 2024

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.

This Notice applies to consumer health data, as that term is defined in applicable 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
  • How to exercise your rights

Categories of Consumer Health Data We May Collect

  • Health and medical information, including individual health conditions, lab or testing results, treatments prescribed, and insurance information
  • Personal information that may be used to identify a person’s past, present or future health status
  • 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 our websites or social media
  • From third parties, including healthcare professionals

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 Share Consumer Health Data

We may share consumer health data with parties that we trust or when we are required to share personal data according to applicable law, including:

  • Amylyx group companies: we may share certain consumer health data with our group companies (including Amylyx Pharmaceuticals EMEA BV and Amylyx Pharmaceuticals Distribution Ltd) to develop and maintain our business for purposes consistent with this Notice and on the legal bases described therein, including to centralize processing activities and allow cross-company teams to work together efficiently and to ensure compliance with legal and regulatory obligations to which we or our group companies are subject;
  • Authorities: we may share consumer health data with governmental and regulatory authorities, public institutions, financial authorities, prosecutors, courts and regulatory bodies to the extent this is required under applicable laws, legally binding orders or regulatory guidance. We may also transfer consumer health data to authorities to protect our rights and property, or the rights and property of third parties, for instance in case of legal proceedings;
  • Service providers: we may use third-party service providers to help us achieve the purposes set out in this Notice. We require our service providers to protect the security and confidentiality of consumer health data and to process it in accordance with applicable laws; and
  • Business transfers: we may sell, transfer or otherwise share some or all of our business or assets, including consumer health data, in connection with a business transaction (or potential business transaction) such as a corporate divestiture, merger, consolidation, acquisition, reorganization or sale of assets, or in the event of bankruptcy or dissolution. Consumers will be informed of such business transfers in accordance with applicable laws.

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 or Amylyx Pharmaceuticals, Inc., 43 Thorndike Street, Cambridge, MA 02412, or by calling 877-902-7726.