The portal for rare diseases and orphan drugs

Rare diseases are rare, but
rare disease patients are numerous

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General terms and conditions for treatment of personal data

Orphanet, in its capacity as a provider of high-quality information on rare diseases, informs you that we process your personal data. Your data is subjected to special protection, 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, 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.

If you are involved in the activities of a specialised expert centre, centre of expertise, medical laboratory, research project, clinical trial, patient registry/ mutation database, network, technological platform, patient organisation 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 and invite you to create an account or to declare your new activities and/or to update those already registered via the online registration Orphanet website.
  • • Display your surname, name and email address registered in the Orphanet online registration service when you use the « Have you forgotten your login or password » function in order to ease the recovery of your password.
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 List of Orphanet Reports Series, in products such as Orphanet 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
Your surname, name, professional email address and phone number are collected by the Orphanet team members, and stored in our servers as long as you do not ask for it to be deleted and/or as long as the related content (text, specialised expert centre, centre of expertise, medical laboratory, research project, clinical trial, patient registry/ mutation database, network, technological platform, patient organisation) is still active for the needs of consultation or analysis. In any case, the 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. Orphanet ensures at all times that only authorised persons (members of the Orphanet network and our service providers) have access to your 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.

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 Orphanet. 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 ( or by post to Data protection, Orphanet-INSERM US14, 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 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.

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