unlockNDM Website Privacy Notice

Lupin Neurosciences (hereinafter “Lupin”) is pleased that you are visiting our website. Lupin Neurosciences is a Specialty Pharma Division of Lupin committed to improving the lives of patients affected by underserved neurological disorders. Data protection and data security are very important to us. Therefore, we would like to inform you about the personal data we collect during your visit to our website and about the intended purposes.

As changes to the law or changes to our corporate processes may require an adaptation of this privacy statement, we ask you to read this privacy policy regularly. The privacy policy can be accessed any time under “Privacy Notice”, saved and printed out.

§ 1.  Data Controller and Scope

The controller according to the EU General Data Protection Regulation (hereinafter: GDPR) and other national data protection acts of the Member States, as well as other data protection regulations, is:

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

§ 2   Data Protection Officer

The (external) Data Protection Officer of Lupin can be contacted at:

Dr. Karsten Kinast, LL.M., Attorney at Law (Germany)
KINAST Rechtsanwaltsgesellschaft mbH
Hohenzollernring 54
D-50672 Cologne, Germany
E-Mail: dpo-eu@lupin.com

§ 3   Principles of Processing Personal Data

Personal data are all information relating to an identified or identifiable natural person. This includes information such as your name, age, address, telephone number, date of birth, e-mail address, IP address or user behavior. Information that cannot (or only with a disproportionate effort) be referred to your person, e.g. by anonymizing the information, is not personal data. The processing of personal data (e.g. the collection, retrieval, use, storage or transmission) always requires a legal basis or your consent.

Processed personal data will be deleted as soon as the purpose of the processing has been fulfilled and no legally prescribed retention obligations are to be observed.

In case we process your personal data for the provision of certain offers, please find below information about the specific processes, the scope and purpose of data processing, the legal basis for processing and the respective storage period.

§ 4   Data Processing

1) Website

a. Scope and Purpose of the Processing

When you access and use our website, we only 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 recorded to the extent necessary for the provi­sion of a functional website and our contents and services:

  • IP address of the requesting computer
  • Date and time of access
  • Name and URL of the retrieved file
  • The website from which access is made (referrer URL)
  • The used browser and, if applicable, the operating system of your computer as well as the name of your access provider

b. Legal Basis

Art. 6 (1) (f) GDPR serves as the legal basis for the data processing. The processing of the mentioned data is necessary for the provision of our services and thus serves the protection of a legitimate interest of our company.

c. Data Deletion and Storage Time

The data subject’s personal data are deleted or blocked as soon as the purpose of the storage is fulfilled. The collection of data for the provision of the website and the storage of data in log files is absolutely necessary for the operation of the website. Consequently, there is no possibility of objection for the user. Further storage may take place in individual cases if this is required by law.

2) Contact

a. Scope and Purpose of Processing

On our website we offer you the opportunity to get in contact with us. In case you make use of this possibility, the following personal data will be processed:

  • e-mail address
  • such information, which you provide to us as part of your contact request

The purpose of entering your e-mail address is to assign your request and to be able to reply to you. Your personal data will not be forwarded to third parties.

b. Legal Basis

The data processing described above for the purpose of establishing contact is carried out voluntarily in accordance with Art. 6 (1) (a) GDPR.

c. Storage Time

Once your request has been processed and all relevant details have been clarified, your personal data will be deleted. It may be retained in individual cases if this is required by law.

3) Your NDM Story

a. Scope and Purpose of Processing

On our website we offer you to share your NDM Story with us. In case you make use of this possibility, the following personal data will be processed:

  • Contact details and e-mail adress
  • such information, which you provide to us as part of your story (for example your uploaded media, statement, photo, video etc.)

b. Legal Basis

The data processing described above for the purpose of establishing contact is carried out voluntarily in accordance with Art. 6 (1) (a) GDPR.

c. Storage

Your personal data will be sent to Lupin Neurosciences by end-to-end encryption and stored on a secure server hosted by Hostpoint, Switzerland. Any media files will be scanned for viruses. Once your request has been processed and all relevant details have been clarified, your personal data will be deleted. It may be retained in individual cases if this is required by law.

Such data, which we will publish as part of your story and with your explicit consent, will only be stored for the duration of the project and will be deleted afterwards. Please see § 8 for further information regarding the usage of video-files.

§ 5   Third Party Transfers

We only share your personal information with third parties if:

  • you have given your express consent pursuant to Art. 6 (1) (a) GDPR,
  • it is legally permissible and necessary for the fulfilment of a contractual relationship with you pursuant to Art. 6 (1) (b) GDPR,
  • there is a legal obligation to pass on the data in accordance with Art. 6 (1) (c) GDPR,
  • the disclosure pursuant to Art. 6 (1) (f) GDPR is necessary to assert, exercise or defend legal claims and there is no reason to assume that you have an overriding interest worthy of protection in not disclosing your data.
§ 6   Cookies

a. Scope and Purpose of Processing

We use cookies on our website. Cookies are small files which are sent by us to the browser of your terminal device and stored there as part of your visit to our internet pages. Some functions of our website cannot be offered without the use of technically necessary cookies. Other cookies allow us to perform various analyses. Cookies are, for example, able to recognize the browser you are using when you visit our website again and to transmit various information to us. We can use cookies to make our internet offer more user-friendly and effective, for example, by tracking your use of our website and by determining your preferred settings (e.g. country and language settings). In case third parties use cookies to process information, they will collect the information directly from your browser. Cookies do not cause any damage to your device. They cannot run programs or contain viruses.

Various types of cookies are used on our website, the types and functions are explained in more detail below.

Our website uses transient cookies, which are automatically deleted when you close your browser. This type of cookie allows us to collect your session ID allowing you to assign different browser requests to a common session and enabling us to recognize your end device during visits to websites in one session.

These cookies are required for technical reasons so that you can visit our website and use the functions we offer. This applies, for example, to the following applications:

  • viewed_cookie_policy – Is the primary cookie that records the user consent for the usage of the cookies upon accept and reject. It doesn’t track any personal data and is set only upon user action(accept/reject).
  • cookielawinfo-checkbox-necessary/cookielawinfo-checkbox-non-necessary – Records the default button state of the corresponding category. It works only in coordination with the primary cookie.
  • CookieLawInfoConsent – Records the default button state of the corresponding category & the status of CCPA. It works only in coordination with the primary cookie.

In addition, these cookies contribute to the safe and correct use of the website.

b. Legal Basis

Due to the described purposes of use the legal basis for the processing of personal data using cookies lies in Art. 6 (1) (f) GDPR. If you have given us your consent to the use of cookies on the basis of a reference (“cookie banner”) given by us on the website, the lawfulness of the use is additionally governed by Art. 6 (1) (a) GDPR.

c. Storage Time

As soon as the data transmitted by the cookies is no longer necessary for the purposes described above, this information will be deleted. Further storage may take place in individual cases if this is required by law.

d. Browser Settings

Most browsers are already set to accept cookies by default. However, you can change your browser settings so that it only accepts certain cookies or no cookies at all. However, we would like to point out that you may no longer be able to use all the functions of our website if cookies are disabled by your browser settings on our website.

You can also use your browser settings to delete cookies already stored in your browser. Furthermore, it is possible to set your browser so that it informs you before cookies are stored. Since the different browsers may differ in their respective functions, we ask you to use the respective help menu of your browser for the setting options.

If you would like a comprehensive overview of all third-party access to your Internet browser, we recommend that you install specially developed plug-ins.

§ 7   Tools for Tracking and Analysis

We do not use tracking and analysis on our website. tools to ensure continuous optimization and user-oriented design of our website. With the help of tracking measures it is also possible for us to statistically record the use of our website by visitors and to further develop our online offer for you with the help of the knowledge gained.

On the basis of these interests, the use of the tracking and analysis tools described below is justified in accordance with Art. 6 para. 1 s. 1 lit. f GDPR. The following description of the tracking and analysis tools also shows the respective processing purposes and the processed data.

§ 8   Plugins

Our website contains social plug-ins of the social network “YouTube” (YouTube LLC., 901 Cherry Ave., San Bruno, CA 94066, USA). It is possible that personal data about visitors to the website may also be collected via these plug-ins, transmitted to the respective service and linked to the respective service of the visitor.

Lupin does not collect any personal data via the social plug-ins. In order to prevent data from being transferred to service providers in the USA without the user’s knowledge, we have used the so-called Shariff solution on our website. This has the effect that the respective social plug-ins are initially only integrated as graphics on the website. These graphics contain a link to the website of the corresponding provider of the plug-in. Only when you click on one of the graphics, you will be forwarded to the service of the respective provider. This solution ensures that personal data are not automatically forwarded to the providers of the respective social plug-ins when you visit our website. If you click on one of the graphics of the social plug-ins, data can be transferred to the respective service provider and stored there. If you do not click on any of the graphics, no data transfer takes place between you and the respective provider of the social plug-in.

After clicking on a social plug-in, the respective service provider receives information that you have visited the corresponding page of our online offer. Please note that you do not need to have a user account with the service in question, nor are you already logged in there. However, if you already have a user account with the relevant service provider and are already logged in to this account while visiting our website, the data collected by the social plug-in will be assigned directly to your account. If you do not wish to be assigned to your profile with the service provider, you must log out of your user account before clicking on one of the social plug-ins.

Please note that Lupin has no influence on whether and to what extent the respective service providers collect personal data. We are not aware of the scope, purpose and storage periods of the respective data collection. However, we would like to point out that it must be assumed that at least the IP address and device-related information is used and recorded via social plug-ins. It is also possible that the respective service providers use cookies.

The scope and purpose of the data collection by the respective service as well as the further processing and use of your data there can be found in the data protection information directly from the website of the respective service. There you will also receive further information about your corresponding data protection rights and setting options for the protection of your privacy:

YouTube LLC., 901 Cherry Ave., San Bruno, CA 94066, USA
https://policies.google.com/privacy?hl=en&gl=de

§ 9   Hyperlinks

Our website contains hyperlinks to websites of other providers. When you activate these hyperlinks, you will be directed directly to the other providers’ website. You will recognize this when the URL is changed. Please note that these websites have their own privacy policies and that we do not accept any responsibility or liability for these policies. Please check these policies before you submit any personal information to these websites.

§ 10   Your Rights as a Data Subject

If your personal data are processed, you are a data subject within the meaning of the General Data Protection Regulation (GDPR) and the following rights apply to you:

  • Pursuant to Art. 15 GDPR you can request information about your personal data processed by us.

In particular, you may obtain information about the purposes of processing, the categories of personal data, the categories of recipients to whom your data have been or will be disclosed, the planned storage period, the existence of a right to correction, deletion, restriction of processing or objection, the right to lodge a complaint with a supervisory authority, the origin of your data, if not collected from us, about transfer to third countries or international organisations, and the existence of automated decision-making, including profiling and, where applicable, meaningful information about the logic involved.

  • Pursuant to Art. 16 GDPR you can immediately demand the correction of incorrect data or the completion of your personal data stored with us.
  • Pursuant to Art. 17 GDPR, you may request the deletion of your personal data stored by us, provided that the processing is not necessary to exercise the right to freedom of expression and information, to fulfil a legal obligation, for reasons of public interest or to assert, exercise or defend legal claims.
  • Pursuant to Art. 18 GDPR, you can request the restriction of the processing of your personal data if you contest the accuracy of the data, if the processing is unlawful, if we no longer need the data and if you refuse their deletion because you need to establish, exercise or defend legal claims. You are also entitled to the right under Art. 18 GDPR if you have objected to the processing in accordance with Art. 21 GDPR.
  • Pursuant to Art. 20 GDPR, you may request that the personal data you have provided us with be received in a structured, current and machine-readable format or you may request that it be transmitted to another person responsible.
  • Pursuant to Art. 7 (3) GDPR you can withdraw your consent at any time. As a consequence, we are no longer allowed to continue the data processing based on this consent for the future.
  • Pursuant to Art. 77 GDPR, you have the right to complain to a supervisory authority. You can contact the supervisory authority of your habitual residence, place of work or our company headquarters.
§ 11   Right to Object

In case the processing of your personal data is based on legitimate interest in accordance with Art. 6 (1) (f) GDPR, you have the right to object to the processing of your personal data in accordance with Art. 21 GDPR insofar as there are reasons which arise from your particular situation or if the objection refers to direct marketing. In the case of direct marketing, you have a general right of objection which will be considered without mentioning any particular situation.

§ 12   Data Security and Security Measures

We are committed to protecting your privacy and treating your personal information confidentially. In order to avoid any manipulation, loss or misuse of your data stored by us, we take extensive technical and organisational security measures that are regularly reviewed and adapted to technological progress. Our security measures are continuously revised in line with technological developments. Our employees are obliged to maintain confidentiality. This includes, among other things, the use of recognized encryption methods (SSL or TLS).

However, we would like to point out that due to the structure of the internet, it is possible that the rules of data protection and the above-mentioned security measures may not be observed by other persons or institutions for which we are not responsible.

In particular, unencrypted data – e.g. if this is done by e-mail – can be read by third parties. We have no technical influence on this. It is the responsibility of the user to protect the data provided by him against misuse by encryption or in any other way.

§ 13   Minors

This website, and the information provided on this website, are not designed or intended for use by children 16 years and younger. Lupin also do not knowingly collect, process or store any Personal Data from any users under the age of 16 without the verifiable consent of a parent or guardian prior to collecting, processing or storing information collected either directly or indirectly through the use of this websites. Parents or guardians of minors may have the right to request to view or delete Personal Data provided by the child either directly or indirectly through the use of this website.

What’s your NDM story?

speech

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.

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