- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
- Services & Trainings
- Get involved
- News & Events
Member news and announcements
Does your association have an event to communicate? Send us your news.
February 2022
The International Rare Disease Showcase
1 - 3 February 2022, online, more information
Webinar “Barriers to Diagnosis: Women and X-linked Diseases
8 February 2022, online, more information
Journée annuelle de l'Association Noonan
12 February 2022, Paris, France, more information
Overgrowth and vascular malformations Webinar
12 February 2022, online, more information
March 2022
CMT France - 31st Congress (in person)
19 March 2022, Saint-Malo, France, more information
Webinar on parental experiences of vascular malformations
26 March 2022, online, more information
Dravet Syndrome Conference 2022
31 March 2022, Madrid, more information
April 2022
European Dravet Syndrome Advanced Therapies Meeting
1 April 2022, Madrid, more information
Reunión Anual de Familias
2 April 2022, Madrid, more information
IPWSO Summit on Newborn screening for Prader-Willi Syndrome and other chromosome 15 abnormalities
3 April 2022, online, more information
International Primary Immunodeficiencies Congress
27 - 29 April 2022, Portugal, more information
June 2022
Afadoc: Il XVI WORKSHOP PER LA FAMIGLIA
2 - 5 June 2022, Naples, Italy, more information
Batten Disease Family Association Conference 2022
11 – 12 June 2022, Stratford-upon-Avon, England, more information
July 2022
11th International Prader-Willi Syndrome Organisation Conference!
6 – 10 July 2022, University of Limerick, Ireland, more information
This page is reserved for news, events & announcements concerning Eurordis’ member organisations.
To submit your announcement, e-mail:
Anja Helm
Manager of Relations with Patient Organisations
anja.helm@eurordis.org
Cette page est réservée aux actualités, événements et annonces des membres d’Eurordis.
Merci d’envoyez votre annonce à:
Anja Helm
Manager of Relations with Patient Organisations
anja.helm@eurordis.org
Esta pagina esta reservada para anuncios y acontecimientos de los miembros d’Eurordis.
Por favor, mande su anuncio por e-mail a:
Anja Helm
Senior Manager of Relations with Patient Organisations
anja.helm@eurordis.org
Diese Seite ist für Nachrichten, Ereignisse und Anzeigen von Eurordis Mitgliedern.
E-mail
Anja Helm
Senior Manager of Relations with Patient Organisations
anja.helm@eurordis.org
Esta página está reservada a notícia
s, acontecimentos e anúncios relativos às organizações associadas da EURORDIS.
Envie o seu anúncio por correio electrónico para
Anja Helm
Responsável pelas Relações com as Organizações de Doentes da EURORDIS
anja.helm@eurordis.org
Questa pagina è riservata a notizie, eventi e avvisi di attività organizzate dai membri di EURORDIS.
Per presentare il vostro annuncio:
Indirizzo e-mail:
Anja Helm
Direttrice delle relazioni con le Organizzazioni di Pazienti
anja.helm@eurordis.org
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative