Orphanet: Quality charter<strong>Orphanet Reports Series / Procedures</strong>

Orphanet Reports Series

Orphanet reports are a serie of texts covering topics relevant to all rare diseases. New reports are regularly put online and some of these texts are periodically updated.

Rare diseases

	List of rare diseases and synonyms in alphabetical order (Annual update)
	Prevalence, Incidence or reported number of published cases listed in alphabetical order of disease (Annual update) - n°1 This document has been translated into Russian january 2022 - n°1 Diseases listed by decreasing prevalence, incidence or number of published cases (Annual update) - n°2 This document has been translated into Russian january 2022 - n°2
	Rare Disease Registries (Annual update)
	Research Infrastructures useful to Rare Diseases (Annual update)

Orphan Drugs

	Medicinal products for rare diseases in Europe (Annual update)

Activity reports

	25 Years of Orphanet To mark 25 years of Orphanet, a leaflet has been produced collating the input received from Orphanet members and the wider rare disease community concerning the impact of Orphanet on the rare disease ecosystem since its creation. Orphanet Activity Report, 2023 A leaflet presenting Orphanet's activities and latest developments has also been produced in English Orphanet Activity Report, 2022 A leaflet presenting Orphanet's activities and latest developments has also been produced in English Orphanet Activity Report, 2021 A leaflet presenting Orphanet's activities and latest developments has also been produced in English Orphanet Activity Report, 2020 A leaflet presenting Orphanet's activities and latest developments has also been produced in English Orphanet Activity Report, 2019 A leaflet presenting Orphanet's activities and latest developments has also been produced in English Orphanet Activity Report, 2018 This document has been translated or adapted into Spanish. A leaflet presenting Orphanet's activities and latest developments has also been produced in English Orphanet Activity Report, 2017 This document has been translated or adapted into French and Spanish. A leaflet presenting Orphanet's activities and latest developments has also been produced in English and Italian Orphanet Activity Report, 2016 This document has been translated or adapted into Polish and Spanish. A leaflet presenting Orphanet's activities and latest developments has also been produced in English Orphanet Activity Report, 2015 This document has been translated or adapted into French, Italian, Spanish and Polish. Partner countries Activity Reports: Italy Orphanet Activity Report, 2014 This document has been translated or adapted into Italian and Spanish. Partner countries Activity Reports: Italy Orphanet Activity Report, 2013 This document has been translated or adapted into French, Italian & Spanish. Partner countries Activity Reports: Italy Orphanet Activity Report, 2012 This document has been translated or adapted into French, Italian and Spanish. Partner countries Activity Reports: Spain Orphanet Activity Report, 2011 This document has been translated or adapted into French, Italian, Spanish and Polish. Partner countries Activity Reports: Portugal, Spain, Italy Orphanet Activity Report, 2010 Orphanet Activity Report, 2009
	Orphanet 2024* Users Satisfaction Survey Orphanet 2023* Users Satisfaction Survey Orphanet 2022* Users Satisfaction Survey Orphanet 2021* Users Satisfaction Survey Orphanet 2020* Users Satisfaction Survey Orphanet 2018* Users Satisfaction Survey Orphanet 2017* Users Satisfaction Survey Orphanet 2016* Users Satisfaction Survey Orphanet 2015 Users Satisfaction Survey Orphanet 2014 Users Satisfaction Survey Orphanet 2013 Users Satisfaction Survey Orphanews Italia satisfaction Survey 2013 Orphanet 2012 Users Satisfaction Survey Orphanet 2011 Users Satisfaction Survey Orphanet 2010 Users Satisfaction Survey OrphaNews 2023* Reader Satisfaction Survey OrphaNews 2022* Reader Satisfaction Survey OrphaNews 2019* Reader Satisfaction Survey OrphaNews Europe 2010 Reader Satisfaction Survey
	List of experts contributing to Orphanet's scientific data validation 2023 List of experts contributing to Orphanet's scientific data validation 2022 List of experts contributing to Orphanet's scientific data validation 2021 List of experts contributing to Orphanet's scientific data validation 2020 List of experts contributing to Orphanet's scientific data validation 2019 List of experts contributing to Orphanet's scientific data validation 2018 List of experts contributing to Orphanet's scientific data validation 2017 List of experts contributing to Orphanet's scientific data validation 2018 List of experts contributing to Orphanet's scientific data validation 2017 List of experts contributing to Orphanet's scientific data validation 2016 List of experts contributing to Orphanet's scientific data validation 2015

25 Years of Orphanet
To mark 25 years of Orphanet, a leaflet has been produced collating the input received from Orphanet members and the wider rare disease community concerning the impact of Orphanet on the rare disease ecosystem since its creation.
Orphanet Activity Report, 2023
A leaflet presenting Orphanet's activities and latest developments has also been produced in English
Orphanet Activity Report, 2022
A leaflet presenting Orphanet's activities and latest developments has also been produced in English
Orphanet Activity Report, 2021
A leaflet presenting Orphanet's activities and latest developments has also been produced in English
Orphanet Activity Report, 2020
A leaflet presenting Orphanet's activities and latest developments has also been produced in English
Orphanet Activity Report, 2019
A leaflet presenting Orphanet's activities and latest developments has also been produced in English
Orphanet Activity Report, 2018
This document has been translated or adapted into Spanish.
A leaflet presenting Orphanet's activities and latest developments has also been produced in English
Orphanet Activity Report, 2017
This document has been translated or adapted into French and Spanish.
A leaflet presenting Orphanet's activities and latest developments has also been produced in English and Italian
Orphanet Activity Report, 2016
This document has been translated or adapted into Polish and Spanish.
A leaflet presenting Orphanet's activities and latest developments has also been produced in English
Orphanet Activity Report, 2015
This document has been translated or adapted into French, Italian, Spanish and Polish.
Partner countries Activity Reports: Italy
Orphanet Activity Report, 2014
This document has been translated or adapted into Italian and Spanish.
Partner countries Activity Reports: Italy
Orphanet Activity Report, 2013
This document has been translated or adapted into French, Italian & Spanish.
Partner countries Activity Reports: Italy
Orphanet Activity Report, 2012
This document has been translated or adapted into French, Italian and Spanish.
Partner countries Activity Reports: Spain
Orphanet Activity Report, 2011
This document has been translated or adapted into French, Italian, Spanish and Polish.
Partner countries Activity Reports: Portugal, Spain, Italy
Orphanet Activity Report, 2010
Orphanet Activity Report, 2009

List of experts contributing to Orphanet's scientific data validation

Orphanet Reports Series

ORPHANET USER SATISFACTION SURVEY 2025