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Privacy Policy

Last updated: August 2024

Introduction

Lupin Neurosciences, a Specialty Pharma Division of Lupin Atlantis Holdings SA (“Lupin,” “we,” or “us”), is pleased that you are visiting our website. We are committed to improving the lives of patients affected by underserved neurological disorders. Data protection and data security are very important to us.

This Privacy Notice (or “Notice”) communicates to you how Lupin will make use of information that identifies or can reasonably be used to identify you (“personal data”) when you visit this website and describes your data protection rights, including the right to object to some of the processing Lupin carries out. More information about your rights and how to exercise them is set out in the “Your choices and rights” section.

Data Controller

The body that determines how and why your personal data is processed is defined as the “Controller.” The Controller of your personal data is:

Lupin Atlantis Holdings SA
Landis + Gyr Str. 1
CH – 6300 Zug, Switzerland
Phone: +41 (0)52 633 70 00
E-Mail: customerserviceLEG@lupin.com

You can contact us at the details above if you have questions about this notice or wish to contact us for any reason in relation to personal data processing.

Compliance with applicable laws

When using your personal data, Lupin as Controller will always comply with relevant data privacy and data protection laws, including regulatory and national law requirements that may apply, and where applicable, giving you the specific rights that apply in the country where you reside (altogether “Applicable Data Protection Law”).

Data Protection requirements

Lupin will comply with data protection law. This means that the personal data we hold about you must be:

  • Used lawfully, fairly, and in a transparent way;
  • Collected only for valid purposes that we have explained to you clearly and not used in any way that is incompatible with these purposes;
  • Relevant to the purposes we have told you about and limited to those purposes only;
  • Accurate and kept up to date;
  • Kept only for such time as is necessary for the purposes we have told you about; and
  • Kept securely.

Data Processing

Device Information

When you access and use our website, we collect the personal data that your browser automatically transmits to our server. This information is temporarily stored in a log file. The following personal data is processed to the extent necessary for the provision of a functional website and our contents and services (“Device Information”):

  • IP address
  • Main language of browser
  • Date and time of access in local time zone
  • Country, region, city
  • Title of the page(s) being viewed
  • Page generation time
  • URL of the page that was viewed prior to the current page (i.e., the “referrer URL”)
  • Files that were clicked and downloaded
  • Screen resolution
  • Type of browser, browser version, device type, and operating system
  • Network type (e.g., WiFi, broadband, or mobile)
  • The name of your internet access provider

 

Personal data we collect from you

We collect your personal data, including Device Information, from you and process it for the following purposes and based on the following legal bases under GDPR (where applicable):

 

Category of personal data Purpose for processing Legal basis
Device Information (IP address) and your language preference (if selected using the dropdown on the Site) To tailor the language of the Site to suit your location/preference. Our legitimate interest in ensuring your user experience is optimized to your needs.
Device Information We may be required by applicable law to disclose the Device Information in our server logs to law enforcement bodies or regulators. Legal obligation
Device Information To the extent necessary for the provision of a secure and functional website. Necessary for our performance of a contract with you (our terms of use for provision of the website).
Contact information (such as your name and e-mail address) Such information you provide to us in an email or via telephone conversation (e.g., information about your (medical) inquiry and, if applicable, your health data). Our legitimate interest in being able to respond to your query, the necessity for our performance of a contract with you, as well as our legal obligations.

 

Pharmacovigilance / Reporting of adverse effects

Please note that the Lupin group has designated Hormosan Pharma GmbH / Lupin Europe GmbH as representatives for pharmacovigilance activities in the European Union. This means these entities are responsible for the processing of data in connection with such activities (including but not limited to the reporting of adverse effects). For further information, please see the Hormosan Pharma Privacy Statement.

Your NDM Story

On our website, we offer you the opportunity to share your NDM Story with us. If you make use of this possibility, your personal information will be sent to Lupin by end-to-end encryption and stored on a secure server hosted by Hostpoint Switzerland. Any media files will be scanned for viruses. Your personal data as part of your story will be used to raise disease awareness only. The following personal data will be processed:

  • Contact details and e-mail address
  • Information you provide as part of your story (e.g., uploaded media, statement, photo, video, etc.)

This data processing for the purpose of establishing contact is carried out based on your consent in accordance with Art. 6 (1) (a) GDPR and Art. 9 (2) (a). You have the right to withdraw your consent at any time. If you withdraw your consent, this will not affect the lawfulness of processing based on consent before its withdrawal.

Retention

We retain your personal data for no longer than is necessary for the purposes for which it is processed. More specifically:

  • In general, we apply a retention period of no more than six months.
  • Where we collect your personal data to tailor the language of the Site to suit your location or preference, it is retained for no longer than your browser session.
  • Further storage may occur in individual cases if required by applicable law.

Data sharing

We share your personal data with the following categories of recipients:

  • Our hosting provider (our website is hosted by a third-party provider on servers located in the UK).
  • In some scenarios, we may be required to share your personal data with law enforcement agencies or regulators in accordance with applicable law.
  • In the event that our business is sold or integrated with another business, your details will be passed to the new owners to continue operating the Site.

International Transfers

The Site is hosted on secure servers in the UK.

Your Choices & Rights as a Data Subject

If you are based in Switzerland, the UK, or the EU, you have at least the following rights:

 

Right Summary
The right of access Enables you to receive a copy of your personal data.
The right to rectification Enables you to correct any inaccurate or incomplete personal data we hold about you.
The right to erasure Enables you to ask us to delete your personal data in certain circumstances.
The right to restrict processing Enables you to ask us to halt the processing of your personal data in certain circumstances.
The right to object Enables you to object to us processing your personal data on the basis of our legitimate interests (or those of a third party). Your objection will be upheld unless the processing is based on compelling legitimate grounds or is needed for legal claims.
The right to data portability Enables you to request us to transmit personal data that you provided to us to a third party, or give you a copy of it, where technically feasible.

These rights may be limited if fulfilling your request would reveal personal data about another person or if you ask us to delete information we are required by law to retain. If you wish to exercise any of these rights, please email us at customerserviceLEG@lupin.com.

Data Security and Security Measures

We are committed to protecting your privacy and treating your personal information confidentially. We take extensive technical and organizational security measures to prevent manipulation, loss, or misuse of your data. Our security measures are regularly reviewed and adapted to technological progress.

Minors

This website is not intended for use by children aged 16 years and younger. Lupin does not knowingly collect personal data from any users under 16 without verifiable parental consent. Parents or guardians may request to view or delete personal data provided by the child.

Contact Information

For questions about this notice or data processing, please contact us:

Bird & Bird DPO Services SRL
Avenue Louise 235 b1, 1050 Brussels, Belgium
Email: dpo@lupin.com

If you have any concerns, you may complain to a data protection authority in your country of residence.

Update to this privacy notice

Changes to laws or corporate processes may require an update to this Privacy Notice. We recommend reviewing it regularly. The most current version can always be accessed on this website.

 

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What’s your NDM story?

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Share your story of your journey with NDM here

You are free to share your story in writing, video, audio, painting, or any other form that helps you tell your story about your journey with NDM.

Share your story

Foods to avoid on a low-potassium diet*

  • Fruit1,2
  • Vegetables1,2
  • Beans/legumes1,3
  • Other1-3
  • Avocado
  • Artichoke
  • Baked beans
  • Bran cereal
  • Apricots
  • Beetroot
  • Kidney beans
  • Dairy (eg yoghurt, milk)†
  • Bananas
  • Brussel sprouts
  • Lentils
  • Nuts
  • Dried fruits eg dates, raisins and prunes
  • Broccoli (cooked)
  • Brown rice
  • Grapefruit
  • Okra
  • Salt substitutes
  • Kiwi
  • Parsnip
  • Wholewheat bread and pasta
  • Mango
  • Potatoes (processed or with skin on)
  • Melons
  • Cooked spinach
  • Nectarines
  • Tomato (concentrated, eg. Tomato puree)
  • Oranges and orange juice
  • Papaya
  • Pomegranate and pomegranate juice

  • Fruit1,2

    Avocado

    Apricots

    Bananas

    Dried fruits eg dates, raisins and prunes

    Grapefruit

    Kiwi

    Mango

    Melons

    Nectarines

    Oranges and orange juice

    Papaya

    Pomegranate and pomegranate juice

  • Vegetables1,2

    Artichoke

    Beetroot

    Brussel sprouts

    Broccoli (cooked)

    Okra

    Parsnip

    Potatoes (processed or with skin on)

    Cooked spinach

    Tomato (concentrated, eg. Tomato puree)

  • Beans/legumes1,3

    Baked beans

    Kidney beans

    Lentils

  • Other1-3

    Bran cereal

    Dairy (eg yoghurt, milk)†

    Nuts

    Brown rice

    Salt substitutes

    Wholewheat bread and pasta

*Meat and fish contain a moderate amount of potassium but they are an important source of protein so shouldn’t be avoided; †Dairy products contain potassium but are an important source of calcium so should be consumed in moderation
References
  • WebMD. Low-potassium diet: what to know? Available at: https://www.webmd.com/food-recipes/low-potassium-diet-foods ; Accessed March 2021
  • St Georges Kidney Patients Association. Eating on a low potassium diet. Available at: https://www.sgkpa.org.uk/main/eating-well-on-a-low-potassium-diet-2 ; Accessed March 2021
  • NHS. Information for people on a low potassium diet. Available at: https://www.nth.nhs.uk/content/uploads/2019/02/PIL1061-Information-for-people-following-a-low-potassium-diet-Final-11.02.19-LP.pdf ; Accessed March 2021
  • NDM type1
  • Symptoms2,3
  • Which type of ion channel? 2,3
  • How is it inherited?2,3

  • Thomsen myotonia congenita

    (also called Thomsen myotonia or autosomal dominant myotonia congenita)
  • Lower limbs tend to be more affected, although can also affect the arms, hands and face. Stiffness may be worse when you first try to move after a period of inactivity, and may ease as you ‘warm up’.
  • Chloride (Cl-)
  • Autosomal dominant

  • Becker myotonia congenita

    (also called Becker myotonia, Becker disease, generalized myotonia, recessive generalized myotonia or autosomal recessive myotonia congenita
  • Lower limbs tend to be more affected, although can also affect the arms, hands and face. Stiffness may be worse when you first try to move after a period of inactivity, or if you are startled, and may ease as you ‘warm up’. Sometimes people with Becker myotonia congenita experience temporary weakness after an episode of myotonia.
  • Chloride (Cl-)
  • Autosomal recessive

  • Paramyotonia congenita

    (Also called Eulenburg disease, paralysis periodica paramyotonia, paramyotonia congenita of von Eulenburg, PMC or von Eulenburg’s disease)
  • Myotonia mainly affects hands and face and gets worse with exercise. Cold is also a key trigger of myotonia, and muscle weakness after an episode of myotonia may last hours or sometimes days.
  • Sodium (Na+)
  • Autosomal dominant

  • Sodium channel myotonia, SCM:

    myotonia permanens and myotonia fluctuans, acetazolamide-responsive myotonia (ARM) previously known as Potassium aggravated myotonias (PAM)
  • Potassium-aggravated myotonia is a rare form of NDM that affects all areas of the body. Myotonia attacks are triggered by eating potassium-rich foods. Symptoms may fluctuate widely from day to day (myotonia fluctuans) or are constant and severe (myotonia permanens).
  • Sodium (Na+)
  • Autosomal dominant

  • Other closely related sodium disorders with myotonia

    (including hyperkalemic paralysis or hyperPP)
  • Myotonia is usually mild, and often involves the eyelids, hands, and tongue. Attacks of weakness can occur at any time and are commonly triggered by rest following exercise, fasting, eating potassium-rich foods or stress.
  • Sodium (Na+)
  • Autosomal dominant
References
  • Stunnenberg B. Muscle Nerve. 2020 Oct; 62(4): 430–444
  • Hahn C, Salajegheh MK. Iran J Neurol 2016;15:46–53
  • Matthews E, et al. Brain 2010:133; 9–22

  • NDM type1

    Thomsen myotonia congenita

    (also called Thomsen myotonia or autosomal dominant myotonia congenita)

    Becker myotonia congenita

    (also called Becker myotonia, Becker disease, generalized myotonia, recessive generalized myotonia or autosomal recessive myotonia congenita

    Paramyotonia congenita

    (Also called Eulenburg disease, paralysis periodica paramyotonia, paramyotonia congenita of von Eulenburg, PMC or von Eulenburg’s disease)

    Sodium channel myotonia, SCM:

    myotonia permanens and myotonia fluctuans, acetazolamide-responsive myotonia (ARM) previously known as Potassium aggravated myotonias (PAM)

    Other closely related sodium disorders with myotonia

    (including hyperkalemic paralysis or hyperPP)

  • Symptoms2,3

    Lower limbs tend to be more affected, although can also affect the arms, hands and face. Stiffness may be worse when you first try to move after a period of inactivity, and may ease as you ‘warm up’.

    Lower limbs tend to be more affected, although can also affect the arms, hands and face. Stiffness may be worse when you first try to move after a period of inactivity, or if you are startled, and may ease as you ‘warm up’. Sometimes people with Becker myotonia congenita experience temporary weakness after an episode of myotonia.

    Myotonia mainly affects hands and face and gets worse with exercise. Cold is also a key trigger of myotonia, and muscle weakness after an episode of myotonia may last hours or sometimes days.

    Potassium-aggravated myotonia is a rare form of NDM that affects all areas of the body. Myotonia attacks are triggered by eating potassium-rich foods. Symptoms may fluctuate widely from day to day (myotonia fluctuans) or are constant and severe (myotonia permanens).

    Myotonia is usually mild, and often involves the eyelids, hands, and tongue. Attacks of weakness can occur at any time and are commonly triggered by rest following exercise, fasting, eating potassium-rich foods or stress.

  • Which type of ion channel? 2,3

    Chloride (Cl-)

    Chloride (Cl-)

    Sodium (Na+)

    Sodium (Na+)

    Sodium (Na+)

  • How is it inherited?2,3

    Autosomal dominant

    Autosomal recessive

    Autosomal dominant

    Autosomal dominant

    Autosomal dominant

References
  • Stunnenberg B. Muscle Nerve. 2020 Oct; 62(4): 430–444
  • Hahn C, Salajegheh MK. Iran J Neurol 2016;15:46–53
  • Matthews E, et al. Brain 2010:133; 9–22