- 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
EURORDIS member groups are welcome to send news and announcements to be published on this page.
Does your association have an event to communicate? Send us your news.
May 2019
Familienkonferenz von ZNM - Zusammen Stark! e. V.
10 - 12 May, Hessen Hotelpark Hohenroda, Hohenroda, more information
CORD Conference – A Rare International Dialogue
10-12 May 2019, Toronto, Canada, more information
22q11 Northern Ireland Conference
17 May, Belfast, United Kingdom, more information
SIOP Europe 2019 Annual Meeting
20-25 May, Prague, Czech Republic, more information.
June 2019
Gaucher Regional Meeting-Together Towards Improvement of Diagnosis, Treatment and Management
7-9 June, Struga, North Macedonia, more information
Regional Meeting on Rare Diseases Macedonia
7-9 June, Struga, North Macedonia, more information
See, Hear, Smile - Topical Meeting on Osteogenesis Imperfecta
14-15 June, Riga, Latvia, more information
NORD Summit – Living Rare, Living Stronger
21-23 June, Houston, USA, more information
July 2019
Cornelia de Lange syndrome World conference
31 July - 03 August 2019, Bad Neuenahr-Ahrweiler, Germany, more information
November 2019
International Primary Immunodeficiencies Congress (IPIC) 2019
6-8 November, Madrid, Spain, 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