Privacy policy

This privacy policy sets out how argenx BV, Industriepark-Zwijnaarde 7 – 9052 Zwijnaarde (Gent) – Belgium, (“CIDP United”, “we”, “us”, or “our”) collects, uses, and discloses Personal Data that you give us or that we collect when you use our website at when you use our website at https://www.cidp-united.eu/ (the "Site").

CIDP United is dedicated to providing people living with Chronic Inflammatory Demyelinating Polyradiculoneuropathy ("CIDP") and those who care for them with general information and updates (newsletter) and/or carefully selected resources that try to address the unique ways CIDP can affect their life (“Services”).

By using our Site or providing us with your personal data, you consent to this Privacy Policy and the processing of your personal data as described herein. If you do not agree with any terms of this Privacy Policy, please exercise the choices outlined below or refrain from using the Site and providing personal data.

We may update this Privacy Policy periodically. You should check this page regularly to ensure you are aware of any changes. Your continued use of our Site and Services after such changes constitutes acceptance of the revised Privacy Policy.

Policy summary

1. What Personal Data we collect. We collect personal data to provide our Site and Services. For example, if you provide it, we collect data such as your name, email address, and other information you provide about yourself, such as such as information about your experience with CIDP and your goals.

2. What we do with the Personal Data we collect. We use the information we collect to provide and improve our Site and Services and for the purposes we describe in this Policy.

For example, if you sign up for our newsletter, we send information about CIDP updates, resources, tips, and more. If you sign up for a personalised experience, we send information based on your preferences and needs.

3. When we Disclose Personal Data. We may share information with third parties that help us provide our Services. For example, we may use a third party to host our website. We may also share information if we enter a business transaction, to protect ourselves or others, or if required or permitted by law.

4. How we Collect Information using Technology. We use cookies and other technologies to collect information about how our Site is used and to display it better. For more information, please refer to our Cookie Policy.

5. Your Choices. If you receive messages from us, you may contact us to ask us not to send these to you. You may withdraw your consent to our use or disclosure of your Personal Data by sending your request to privacy@argenx.com. Please note that if you withdraw consent for processing of personal data that we need to process to provide our Services, we may not be able to provide those services to you.

1. What personal data we collect

“Personal Data” means any information relating to an identified or identifiable natural person, such as a first and last name, an email address, or biographical and/or health-related information.

The Personal Data we may collect depends on how you choose to use our Site and Services. For example, we may collect the following information:

[e.g.name (your name may be provided to argenx if it is included as part of your email address);
country of residence;
email address;
whether you are a patient, a caregiver, or a healthcare professional;
your gender or the gender of your loved one;
type of relationship with a loved one living with CIDP (for caregivers only);
source of information: how a user heard about CIDP United;
information you provide about your CIDP goals;
information that you submit by choosing specific subjects of interest;
information you provide about your experience with CIDP, including biography and medical or health details (e.g., symptoms), if you choose to share them; and
other information such as communications with us, surveys, and any additional data you voluntarily provide.

Please note, you may only provide us with information regarding your experiences, not those of another person, unless you have that person’s consent to this Privacy Policy.

2. Sources and means of personal data collection

We primarily collect Personal Data directly from you when you provide it through the Site (e.g., completing a form). You may only provide information about another person if you have their explicit consent. Additionally, we collect technical data using cookies and tracking technologies as described in Section 5.

3. How we use personal data

We use the information we collect to:

To better understand the needs and goals of the CIDP community;
send newsletters with medical and scientific information, resources, and updates about CIDP (if you opt-in);
provide personalized content based on your selected topics, areas of interest, and goals;
offer quizzes or surveys that provide tips and suggestions;
improve our services and enhance the user experience;
administer, maintain, and manage the site;
respond to inquiries and resolve disputes;
investigate security breaches and comply with legal obligations; and
use anonymized or aggregated data for analysis and research].

4. When we disclose personal data

Users are not allowed to post on the website at this time. However, if you wish to share your story with the CIDP United community, please use the dedicated form to express your interest. In that case, your story will be posted publicly on the Site. Any information that you will choose to share with us to be posted will appear on the Site and may be seen by other visitors to the Site. Please only share information you are conformable with posting online.

We may share Personal Data with third-party service providers assisting in operating the Site, providing Services, or performing analytics. We may also disclose information:

to comply with legal obligations;
in the event of a business transaction (e.g., merger, acquisition);
to protect our rights or the safety of others;
to fulfill contractual obligations or take steps prior to entering into a contract;
to protect our legitimate interests, such as fraud prevention, security monitoring, or enforcement of our terms and policies, unless overridden by your fundamental rights and freedoms.

5. How we use cookies and other technologies

A cookie is a small file which is placed on your computer or mobile device’s hard drive. Cookies and other technologies can help analyse web traffic or let us know what portions of our site people visit and what features they use. We may use cookies and other technologies to identify and keep track of, among other things, your Internet Protocol ("IP") address, operating system, browser type, username, the pages of the website or App that you visit, the time spent on those pages, access dates and times, clicks, links used, and actions you take on our Site, any errors you encounter, and general location derived from IP address.

We use cookies and other technologies to identify which portions of our Services are being used and how they are being used and to help ensure the Site displays correctly. They also helps us analyse data about traffic on our Site, correct any errors our users encounter, and improve our Services so that they better meet user needs. We also use this information for statistical analysis purposes.

By using the Site, you accept our use of cookies to improve your user experience, analyse site usage and assist in the improvement of our Services.

You can also choose to manage your cookies preferences via our Cookies Settings. You may accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. This may prevent you from taking full advantage of the Services. For more information, please refer to our Cookie Policy.

6. Security

In order to help prevent unauthorised access or disclosure of personal information, we have put in place physical, electronic and managerial procedures to help safeguard and secure the Personal Data we collect.

Personal Data may be accessed by persons within our organization, or our third-party service providers, who require such access to carry out the purposes described in this Privacy Policy or otherwise permitted or required by applicable law.

Even though we have taken steps to help protect the Personal Data in our control, you should know that we cannot fully eliminate security risks associated with personal information. No security measures can provide absolute protection. We cannot ensure or warrant the security of any information you provide to us.

7. How long we keep personal data

We will not retain your Personal Data for longer than necessary for the purposes set out in this Policy. Following this, the Personal Data will be destroyed or rendered anonymous. Different retention periods apply for different types of Personal Data in line with our internal policies and procedures.

8. International transfer of personal data to other countries

Personal Data may be stored and processed outside your country of residence, including in EU/EEA or any other country in which we or our service providers maintain facilities, including in the United Kingdom, Switzerland, the United States and India. For such transfers outside the EU/EEA or your country of residence, we use contractual and/or other means, which include technical and organisational measures, to provide a comparable level of protection while the information is being processed by a third-party service provider or other entity in the destination country.

Personal Data processed and stored in another country may be subject to disclosure or access requests by the governments, courts or law enforcement or regulatory agencies in that country according to its laws.

By using our Services or by providing us with personal data, you consent to any such transfer of data outside of the EU/EEA or your country of residence. If you have any questions about our use of service providers outside of the EU/EEA or your country of residence, you may contact us using the information below.

9. Links to other websites

Our Site and Services may contain links to other websites that may interest you. However, once you have used these links to leave our Site or Services, you should note that we do not have any control over that other website. We cannot be responsible for the protection and privacy of any information which you provide when visiting such sites, and such sites are not governed by this Privacy Policy. You should exercise caution and look at the privacy statement applicable to any website you visit.

10. Your rights and choices

You may choose to restrict the collection or use of your Personal Data in the following ways:

You may write to or email us using the contact information below to withdraw your consent to us using your personal data; For example, you can ask to be removed from our mailing list, or you can ask we remove your story from the Site if you have posted it. If someone has posted it to another site however, that is beyond our control.
If you receive email from us, you can also unsubscribe using the unsubscribe tool we provide in such messages. Alternatively, you can submit your unsubscribe request via email to our privacy office at privacy@argenx.com.
Subject to applicable data protection laws, you may request information about our collection, use, disclosure or storage of personal data.

11. Exercise your privacy rights

Under applicable laws and subject to any legal restrictions, you may have the right to access your Personal Data, to correct inaccurate and/or complete your Personal Data as well as object or restrict any data processing thereof. You also have the right to revoke your consent at any given time without having to provide any reason. All data protection related requests should be addressed to the argenx Privacy Office at privacy@argenx.com.

If we do not handle your request in a timely manner, or if you are not satisfied with our response to any exercise of these rights, you are entitled to lodge a complaint with the competent supervisory authority of your place of residence; for EU/EEA residents, please visit the list of the competent EU data protection authorities and relevant contact details. UK residents may submit a complaint to the Information Commissioner’s Office (ICO). Swiss residents may submit a complaint to the Federal Data Protection and Information Commissioner (FDPIC).

12. Children privacy

We do not intend to collect personal data from children. If you are under 18 years of age, please do not provide us with any information.

13. Contact us

If you have any questions regarding this Privacy Policy, any Personal Data you have submitted to us, or if you would like to:

access Personal Data that you have already provided to us so that you can correct or update it; or
to submit a complaint,

Please advise us by contacting our Privacy Office by email at privacy@argenx.com.

Last updated: May 2026