Knowledge on rare diseases and orphan drugs

Terms of use of the Orphanet website and General Data Protection Regulation (GDPR)

General information

The Orphanet website (www.orpha.net) is a publication of INSERM, US14 - Orphanet (Institut national de la santé et de la recherche médicale), 96, rue Didot, 75014 Paris, France. Editor in Chief of the publication: Ana Rath, Director of Service N° 14, INSERM.

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Disclaimer

The Orphanet network receives European Commission co-funding for some of its activities. The content of this website represents the views of the author(s) only and is his/her sole responsibility; it can not be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.

General Data Protection Regulation and data privacy (GDPR) and Confidentiality

INSERM, US14 - Orphanet, in its capacity as a provider of high-quality information on rare diseases, processes personal data. Data is protected in accordance with the European General Data Protection Regulation (GDPR). Orphanet is committed to guaranteeing the accuracy, integrity and relevance of the personal data collected.

Legal basis

Your surname, name and professional email address, your IP address and, if relevant, your professional phone number are collected in the context of the Inserm's public interest mission, that being to improve the health of all by advancing knowledge of life and disease, innovation in treatment, and public health research.

Aims

If you are involved in the activities of expert centre, medical laboratory, research project, clinical trial, patient registry, biobank, network of expert centres, technological platform, patient organisation, alliance or federation in the rare disease field or as a contributor to Orphanet content as an expert, we collect and register in our information system your surname, name, professional email address and, if relevant, your professional phone number in order to:

• - Display your data on the Orphanet website and derived applications produced by Orphanet (for more details you can read our activity report section). Please note that you have the option of declaring that you do not want your email and/telephone number to be published on the Orphanet site
• - Contact you, at least once a year, by email to declare your new activities and/or to update those already registered.

Occasionally, we will also use your personal data to invite you to:

• - Assess our scientific data and to credit your input as an expert. In this case, your surname and name will be also be shown in our Orphanet Report Series, detailling expert reviewers of data in the knowledge base, n products such as Orphanet’s Emergency Guidelines, Orphanet Articles for the General Public, disability and functional consequences annotations and guides, disease summaries displayed on the Orphanet website, etc;
• - Invite you or to keep you informed of events relating to the rare disease community (conferences, seminars);
• - Invite you to evaluate our services and/or products through surveys.
• - Invite you to participate in surveys or to provide you with targeted information related to your activity.

As a user of the Orphanet website and webservices, your IP address is collected in the server logs for security purposes.

Any other treatment of your personal data than the ones cited above will be subject to a specific request addressed to you.

Responsibilities, storage and duration

Storage of your surname, name, professional email address and phone number

Personal data is collected by the Orphanet team members, and stored in our servers as long as you do not ask for it to be deleted or as long as the related content (text, expert centre, medical laboratory, research project, clinical trial, patient registry, biobank, network of expert centres, technological platform, patient organisation, alliance or federation) is still active for the needs of consultation or analysis. In any case, the personal data retention period shall not exceed 10 years of inactivity after which personal data shall be erased as part of the right to be forgotten.

INSERM, US14 – Orphanet, ensures at all times that only authorised persons (members of the Orphanet network and our service providers) have access to personal data, and that they share the same confidentiality commitments. We strictly ensure that the personal data collected is never transferred to any other party.

Storage of IP addresses (Orphanet web traffic tool and Google analytics)

IP addresses are automatically recorded by our IT system in server logs during one year, only for security analysis purposes. Orphanet uses Google Analytics to analyse our audience and this data is presented in an anonymised format. The only personal data collected are IP addresses and these are not accessible to the Orphanet IT team through the Google Analytics interface. In this scope, the IP addresses of our visitors, as well as their connections and information concerning their browsers, are collected by the company Google Inc. and are processed by servers in the USA and are likely to be shared with or communicated to third parties charged with processing this data for Google Inc.: these third parties could be situated outside of the European Union.

The event data collected by Google Analytics are kept for 14 months.
The users data collected by Google Analytics are kept for 2 months.

For information concerning the conservation of data collected by our web traffic tool, Google Analytics, please consult the Google Inc.'s privacy policy.

Storage of email while using the contact forms

Emails sent to Orphanet teams may be kept in the inboxes of relevant team members, but they are not stored in our database.

Personal rights

In accordance with the French "Informatique et Libertés" law and the GDPR, you have, at any time, the right to access, rectify and contest your personal data collected by INSERM, US14 - Orphanet. Personal data collected by Orphanet on the website is declared to the CNIL, and recorded in dossier N° 756532. You also have a right to request the portability or destruction of your data, the deletion of your account and the limits to data processing. You may exercise these rights at any time by contacting the Data Protection Officer (DPO) of Orphanet (gdpr.orphanet@inserm.fr) or by post to : Data Protection, INSERM, US14 - Orphanet, Plateforme Maladies Rares, 96 rue Didot, 75014 Paris) by providing a copy of proof of identity bearing your signature.

If, 31 days after contacting us, you have not received a response from INSERM, US14 – Orphanet, please contact us again. If you believe that your rights in the field of Information Technology and Liberties are not respected, you are entitled to file a claim with the CNIL online.

Site use

Use of the site is limited to personal use only. INSERM, US14 – Orphanet provides data from the Orphanet knowledge base and services to accompany your research and development needs at orphadata.com. Data, resources and tools to facilitate the implementation of ORPHAcodes (Orphanet Nomenclature of Rare Diseases) and codification of RD are available at www.orphacode.org.

Access to the site can be interrupted at any moment, without forewarning, especially in the case of force majeure, maintenance, or if INSERM US14 decides to suspend or stop the publication of this service. The provision of this service is therefore limited to a best effort undertaking.

Intellectual Property

INSERM holds all intellectual property rights concerning the structure of the database, the format of the website, the Orphanet logo, the Orphanet and Orphadata tradenames and copyright, as well as the data and information on the site (content, texts, classifications, nomenclatures).

No element or part of the site (including, but not limited to, the database and the information contained within) can be copied, translated, reproduced, exploited, published, electronically stocked or redistributed without prior written consent.

We provide access to massive datasets on the Orphadata platform (orphadata.com) under specific conditions. Please refer to the legal notice of Orphadata Science and Orphadata Products for further information.

However, INSERM, US14 - Orphanet allows the user to save all or part of the site's content, in one saved or printed copy. This right applies strictly to personal, private and non-collective use of the material.

We allow links to the home page or one of the Orphanet web pages by third parties if the conditions outlined in the section “Creating a link to a page on the Orphanet website” are respected: by providing a link, rather than copying content from Orphanet, users of a third party resource are sure to access the most up-to-date Orphanet content.

The appropriate form when quoting Orphanet is:

Orphanet: an online rare disease and orphan drug data base. Copyright, INSERM 1999. Available on https://www.orpha.net. Accessed (date accessed).

The appropriate form when quoting an Orphanet text is: Author(s). “Name of disease”. Orphanet Encyclopaedia, Month, year, URL address.

The appropriate form when quoting an Orphanet Emergency Guideline is : Author(s). [Name of disease]. Orphanet Emergency Guideline, Month, year, URL address.

The appropriate form when quoting an Orphanet General Public text is : Author(s). [Name of disease]. Orphanet General Public Encyclopaedia, Month, year, URL address.

The appropriate form when quoting an Orphanet Disability Factsheet is : Author(s). [Name of disease]. Orphanet Disability Factsheet, Month, year, URL address.

Links

The website contains links to other partner or third-party websites. These sites are expert validated before online publication. However, INSERM US14 has no way of checking these sites daily, and cannot offer any guarantee concerning these sites in respect to the current laws and rules in vigour.

Modifications

INSERM US14 reserves the right to change, without forewarning, the present terms of use of the website www.orpha.net

Creating a link to a page on the Orphanet portal

Links to the home page or one of the Orphanet web pages are authorised under the following conditions:

• - providing that these links are not used for commercial or advertisement purposes without prior written consent from Orphanet
• - providing that the correct citation (see below), is clearly indicated on the link or next to it.

This authorisation does not apply to websites publishing information of an illegal nature, be it violent, polemic, pornographic, racist, or bearing prejudice to the sensitivity of the majority.

Citation formats :

Orphanet: an online rare disease and orphan drug data base. Copyright, INSERM 1999. Available on https://www.orpha.net. Accessed (date accessed).

The appropriate form when quoting an Orphanet text is: Author(s). “Name of disease”. Orphanet Encyclopaedia, Month, year, URL address.

The appropriate form when quoting an Orphanet Emergency Guideline is : Author(s). [Name of disease] . Orphanet Emergency Guideline, Month, year, URL address.

The appropriate form when quoting an Orphanet General Public text is : Author(s). [Name of disease]. Orphanet General Public Encyclopaedia, Month, year, URL address.

The appropriate form when quoting an Orphanet Disability Factsheet is : Author(s). [Name of disease]. Orphanet Disability Factsheet, Month, year, URL address.

Use of our logos (Orphanet, Orphadata, Orphadata Science, Orphadata Products, ORPHAcodes, ORDO, HOOM etc) is subject to our prior approval. Please contact us to ask

Creating a link to a document published on the site

All direct or embedded links to a document other than a webpage, notwithstanding their form or content, are prohibited, unless the express authorisation of the editors of the Orphanet website has been given.

This includes in particular, but not exclusively, all documents in a graphic format (such as .jpg, .gif, .png), all multimedia or animated documents (such as .avi, .mov, .wmv, .flv, .swf, .ppt, .pps), all text or word-processed documents (such as .txt, .doc, .docx, .rtf, .xls, .pdf), as well as any other document which cannot be viewed using a standard internet browser.

We therefore recommend that you create links towards the Orphanet web pages containing the links towards these documents, instead of creating links directly to these documents.

Inclusion and using frames

Any use or reproduction, even in part, of one of the elements of the Orphanet web portal on a third-party site using techniques described as ’inclusion’, frames, inlining, or any other technique of a similar nature, is formally prohibited.

Illegal Data

In conformity with the ’Loi pour la confiance dans l’économie numérique’ (’Law for confidence in the digital economy) of 21st June 2009, the Orphanet portal website allows any individual or visitor to signal any content likely to constitute the infractions mentioned in the 5th and 8th paragraph of article 24 of the law of 29th July 1881 concerning the liberty of the press and articles 227-23 and 227-24 of the Penal Code.

In order to signal such content, please contact us using the contact form, giving the URL of the content you deem to be illegal.

Any person who is found to have signalled content/activity as illegal in order to obtain its removal or to halt its publication even though they know that this to be untrue, can be punished under this law by a year of prison and a 15 000€ fine.

Responsibility

The editors and authors of the Orphanet website cannot be held responsible for errors and omissions made in the information published online, nor for the technical problems encountered on the website and on other websites you may be directed to through links on an Orphanet webpage, nor for the interpretation of information published on these sites, as well as the consequences of the use of this information.

Cookies

A cookie is a small alphanumerical text file placed on your hard drive by the server of the website you visit, or by a third party server.

A cookie allows a visitor to be recognised when they return to a web site. However, technically, the cookie allows a machine to be recognised, and not a user. A cookie can only be used by the server that placed it there. Cookies are used to access personalised pages without identifying oneself. Behavioural data are linked to the cookie number and stocked in the server which placed the cookies on the hard drive. A cookie only allows a nominative identification of the user if the user has previously registered on the website (within the limits previously evoked).

When this website is consulted, data relative to the navigation by your device (computer, tablet, smartphone, etc. on our website are likely to be saved in the "Cookie" files installed on your device. Only the party having placed a cookie is able to read or modify the content contained therein.

Use of cookies on the portal website

Browsing the Orphanet website can lead to the use of a persistent cookie (saved on your computer’s hard drive). These cookies have not been devised to collect personal information; they are uniquely intended to ease browsing of the site.

For reasons due to the technology used by one of our contractors, a session cookie may be used when visiting our website in order to make statistical analyses and to record site traffic. If you wish, you can disactivate this cookie by changing the settings of your internet browser. In accordance with article 8.1 of the terms of use of the Google Analytics service, we draw your attention to the following declaration:

“This website uses Google Analytics, a web analytics service provided by Google, Inc. (“Google”). Google Analytics uses “cookies”, which are text files placed on your computer, to help the website analyze how users use the site. The information generated by the cookie about your use of the website (including your IP address) will be transmitted to and stored by Google on servers in the United States . Google will use this information for the purpose of evaluating your use of the website, compiling reports on website activity for website operators and providing other services relating to website activity and internet usage. Google may also transfer this information to third parties where required to do so by law, or where such third parties process the information on Google's behalf. Google will not associate your IP address with any other data held by Google. You may refuse the use of cookies by selecting the appropriate settings on your browser, however please note that if you do this you may not be able to use the full functionality of this website. By using this website, you consent to the processing of data about you by Google in the manner and for the purposes set out above.”

Cookies used by third parties

Cookies can also be placed by partner companies (third party cookies).

The cookies can also saved via our site on your device by social media when you use the social media buttons (« Facebook », « Pinterest », «Instagram », « Google + » etc.).

Cookie management

You can manage cookies in a number of different ways.

Internet browser settings:

At any time you can chose to deactivate these cookies. Your browser can also be configured to alert you when cookies are placed on your computer and can ask you to accept them or refuse them. You can accept or refuse cookies on a case by case basis or refuse them systematically once and for all.

Please be aware that such a configuration is likely to change the access conditions to services which call for the use of cookies.

Please configure your browser bearing in mind the goal of these cookies as aforementioned.

In order to limit or block cookies:

The configuration of each browser is different. This process is described in help menu of your navigator, and will guide you in configuring cookie management according to your wishes.

You can deactivate cookies by following these instructions:

Last update: July 2025