- 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.
April 2020
Maladies rares et Thérapies Complémentaires
24 April, Paris, France, more information
The European IPF Patient Summit
24-26 April 2020, Warsaw, Poland, more information Event has been postponed due to COVID-19, new dates tbc
May 2020
Association Française des Hémophiles- Journée nationale des autres troubles rares de la coagulation
8 May, Lille, France, more information
OIFE Annual General Meeting
8-10 May, Valencia, Spain, more information
2020 Living Rare, Living Stronger NORD Patient and Family Forum
14-16 May, Cleveland, Ohio, USA, more information Event tentatively rescheduled to 18-20 July 2020 due to COVID-19
Europäische Familienkonferenz für Menschen mit Zentronukeären Myopathien
21-24 May 2020, Bad Nauheim, Germany, more information
EHC Conference on Women and Bleeding Disorders
29-31 May 2020, Basel, Switzerland, more information
June 2020
European Polio Union – 2020 Annual General Meeting
10-12 June, Vitoria, N. Spain, more information
1ère Journée de rencontre des familles, cliniciens, chercheurs autour du syndrome de White-Sutton
26 June, Paris, France, more information
July 2020
12th Annual Usher Syndrome Coalition USH Connections Conference
10-11 July 2020, Austin, Texas, USA, more information
September 2020
EEC Sindrome: Ricerca e Confronti
10-12 September, Padova, Italy, more information
Fourth Annual SYNGAP1 Golf Classic and Silent Auction
17 September, Cypress, Texas, USA, more information
October 2020
Journée Sclérose Tubéreuse de Bourneville
3 October, Hospital Necker, Paris, France, more information
Rare Diseases and Orphan Products Breakthrough Summit
October 8-9, Washington, D.C, USA, more information
XVI WORKSHOP AFaDOC PER LA FAMIGLIA
FAMIGLIE IN CAMPO: LE REGOLE DEL GIOCO
16-18 October, Peschiera del Garda, Italy, more information
CMP yearly symposium
17 October, Bruges, Belgium, more information
34th E.S.PKU Conference 2020
29 October - 1 November, Madrid, Spain, more information
November 2020
THE INTERNATIONAL SYNGAP1 CONFERENCE AND FDA PFDD SYNGAP1: Patient Voices
19 November 2020, Rockville, Maryland, USA, more information
The International Netherton Conference
26-27 November, Rotterdam, Netherlands, 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