Member news and announcements

July 2020

IBTA

The Brain Tumour Patients’ Charter of Rights launched, more information

Union Nationale des Syndromes d'Ehlers-Danlos

Publication du 1er  PNDS (Protocole National Diagnostic et de Soins) pour les  Syndromes d’Ehlers-Danlos Non Vasculaires en France, more information

Webinar formativo en Lipodistrofias

30 July, online, more information
 

September 2020

Not(t)e di Respiri 2020 Event

5 September, Forlì, Italy, more information

EEC Sindrome: Ricerca e Confronti

10-12 September, Padova, Italy, more information

Webinar: Autour des Syndromes d'Ehlers Danlos

11 September, online, more information

Fourth Annual SYNGAP1 Golf Classic and Silent Auction

17 September, Cypress, Texas, USA, more information

October 2020

DUAG Mitgliederversammlung

3 October, Frankfurt, Germany, more information

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

20 riunione nazionale dei Pazienti: Fondazione Italiana HHT “Onilde Carini” - Evento On-line

17 October, more information

CMP yearly symposium

17 October, Bruges, Belgium, more information

CMTC-OVM  Members Conference

24 October, more information

34th E.S.PKU Conference 2020

29 October - 1 November, Madrid, Spain, more information

Association Française des Hémophiles- Journée nationale des autres troubles rares de la coagulation

30 October, Lille, France, more information

November 2020

THE INTERNATIONAL SYNGAP1 CONFERENCE AND FDA PFDD SYNGAP1: Patient Voices

19 November 2020, Rockville, Maryland, USA, more information

XI All-Russian Congress of Patients "Development Vector: Patient-Oriented Health Care"

26-29 November, online, more information

The International Netherton Conference

26-27 November, Rotterdam, Netherlands, more information

March 2021

1ère Journée de rencontre des familles, cliniciens, chercheurs autour du syndrome de White-Sutton

Paris, France, more information

April 2021

20th International Vasculitis and ANCA Workshop

18-21 April 2021, Dublin, 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

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Anja Helm
Manager of Relations with Patient Organisations
anja.helm@eurordis.org
 

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Senior Manager of Relations with Patient Organisations
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Anja Helm
Senior Manager of Relations with Patient Organisations
anja.helm@eurordis.org

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Anja Helm
Responsável pelas Relações com as Organizações de Doentes da EURORDIS
anja.helm@eurordis.org

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Direttrice delle relazioni con le Organizzazioni di Pazienti
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