On 12 December 2017, orphan designation (EU/3/17/1951) was granted by the European Commission to Clinical Network Services (UK) Ltd, United Kingdom, for agammaglobulinaemia tyrosine kinase (also known as PRN1008) for the treatment of pemphigus.

The sponsorship was transferred to Clinical Network Services (NL) B.V., The Netherlands, in January 2019.

In August 2020, Clinical Network Services (NL) B.V.changed name to Scendea (NL) B.V.

Key facts

Active substance
Agammaglobulinaemia tyrosine kinase
Disease / condition
Treatment of pemphigus
Date of first decision
EU designation number

Review of designation

The Committee for Orphan Medicinal Products reviews the orphan designation of a product if it is approved for marketing authorisation.

Sponsor's contact details

Scendea (NL) B.V.
De Cuserstraat 93
1081 CN Amsterdam
Tel. +31 2089 49169

Patients' organisations

For contact details of patients’ organisations whose activities are targeted at rare diseases, see:

  • European Organisation for Rare Diseases (EURORDIS), a non-governmental alliance of patient organisations and individuals active in the field of rare diseases.

  • Orphanet, a database containing information on rare diseases, which includes a directory of patients’ organisations registered in Europe.

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