Upcoming EJP RD Events

27

May

2022

1st Workshop on Familial Adult Myoclonic Epilepsy (FAME)

Familial Adult Myoclonic Epilepsy (FAME) is a rare genetic condition, characterized by the occurrence of cortical tremor, myoclonus,…

  • 09:00 - 13:30 (28 May 2022)
  • Naples, Italy

27

May

2022

Regional Cooperation: Conference on new concepts and approaches in lymphoma

A funded networking event “Regional Cooperation: Conference on new concepts and approaches in lymphoma” is being organised in…

  • 10:00 - 14:15 (29 May 2022)
  • Belgrade, Serbia

30

May

2022

From high throughput sequencing to diagnosis in immune mediated disorders ESID/ERN-RITA Workshop

GENERAL INFORMATION ConceptInborn errors of immunity (IEI) manifest as increased susceptibility to severe and/or recurrent infectious diseases, autoimmune…

  • 08:00 - 16:00 (31 May 2022)
  • Paris, France

31

May

2022

ProDGNE Meeting 2022

The ProDGNE consortium is organising the ProDGNE Meeting 2022, a multi-stakeholder opportunity to meet in person, discuss impactful research in GNE Myopathy…

  • 09:30 - 18:30
  • Sala Ágora, NOVA School of Science and Technology, FCT NOVA Caparica, Portugal

09

Jun

2022

EJP RD ERN Workshop: Translational research on bone impairment in rare diseases

GENERAL INFORMATION ConceptBone impairment in rare diseases can affect many patients. Indeed, this concerns a vast number of…

  • 10:00 - 12:35 (10 June 2022)
  • Faculty of Medicine of Lyon, France

10

Jun

2022

Ectodermal dysplasias: Training course and update

GENERAL INFORMATION ConceptEctodermal dysplasias (ED) are rare and orphan genetic conditions affecting the development and/or homeostasis of two…

  • 09:30 - 18:15
  • Paris, France

14

Jun

2022

EJP RD ERN Workshop: Functional exploration of genetic variants in cardiac diseases

Registration has been extended until 20 May  2022 -12hCEST GENERAL INFORMATION ConceptCardiomyopathies and channelopathies are severe and misunderstood…

  • 09:00 - 17:00 (15 June 2022)
  • Lyon, France

14

Jun

2022

Genetic biobanks for Rare Disease Research

GENERAL INFORMATION Rare disease (RD) is one area where national and international multidisciplinary collaborations are valuable to overcome…

  • 09:00 - 17:00 (15 June 2022)
  • Online

27

Jun

2022

11th European Conference on Rare Diseases and Orphan Products (ECRD) 2022

The 11th European Conference on Rare Diseases and Orphan Products (ECRD) 2022 is being organized by EURORDIS and co-organized by Orphanet, with…

  • 14:00 - 18:00 (1 July 2022)
  • Online

04

Jul

2022

Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases

GENERAL INFORMATION ConceptThe study of rare and complex diseases affects the sample size of the study population.Undoubtedly the…

  • 09:00 - 18:00 (5 July 2022)
  • Bari, Italy

26

Sep

2022

International Summer School on Rare Disease Registries and FAIRification of data

REGISTRATION IS NOW OPEN HERE until the 29th of May 2022. IMPORTANT INFORMATIONThe training course will be held in an ONLINE…

  • 13:30 - 17:10 (30 September 2022)
  • Online

29

Sep

2022

Comprehensive gene profiling, molecular tumor board (mtb) and artificial intelligence in the diagnosis and treatment of patients with rare adult cancers

All times are in EEST (Eastern European Summer Time) GENERAL INFORMATION Increased knowledge of cancer molecular biology and…

  • 09:00 - 16:00 (30 September 2022)
  • Turku, Finland

10

Nov

2022

Training for patient representatives and advocates on leadership and communication skills

IMPORTANT INFORMATIONThe training course will be held in an ONLINE FORMAT, given the uncertainties linked to the evolution…

  • 09:30 - 17:30 (11 November 2022)
  • Online