gisela.pairo

ERDERA’s Opening Ceremony Congregates Nearly 600 Participants to Mark the Start of the New Partnership
October 28th, 2024
Nearly 600 people followed ERDERA opening ceremony either online or in person in central Paris on 28 October. We summarise next some highlights from the speakers who took the floor during the event that marked the start of a new era in rare disease research.

Read more

Contact us

Latest News

“If we can remove some of the barriers to accessing education—both visible and invisible—then we could support people with rare diseases in the right way”
May 14th, 2025
My name is Sofie Skoubo, and I’m a PhD student at the Department of Public Health, Aarhus University, The Danish National Rehabilitation Center for Neuromuscular Diseases and cooperate with the Norwegian company No Isolation. Since 2020, I have worked with telepresence robots for children with cancer, neuromuscular diseases, and anxiety, and my research focuses on educational support with the help of the telepresence robot AV1 for students with neuromuscular disease. Besides that, I am a patient with neuromuscular disease and a two-time Paralympian athlete, recently taking part in the 2024 Paris Paralympic Games.

Read more
“I hope ERDERA solidifies the mindset that no single group—be it clinicians, patients, researchers, public authorities, or private entities—can succeed alone”
May 7th, 2025
My name is Alexandre Méjat. I’m a patient by birth; I’m affected by a rare disease called Bethlem myopathy. I’m also a scientist by training: I have a PhD in biology, and I represent AFM-Téléthon in ERDERA, which is a patient organisation from France dedicated to neuromuscular diseases—but more broadly to all rare diseases.

Read more
New survey aims to give under-represented countries a stronger voice in rare-disease research
April 23rd, 2025
A new questionnaire, “Promoting capacity-development actions” – has been released under one of the teams developing the European Rare Diseases Research Alliance (ERDERA) team that focuses on harmonization of the different national capacities. The goal is simple but urgent: to capture first-hand evidence of the funding gaps, technical hurdles and policy barriers that still keep many low- and middle-income or smaller European nations on the sidelines of global rare-disease science.

Read more
Upcoming workshop: Unlocking the complexity of rare diseases through knowledge graphs
April 15th, 2025
Understanding the intricate biological mechanisms underlying rare diseases remains one of the greatest challenges in biomedical research. In response to this complexity, ERDERA is pleased to host the Rare Disease Maps Workshop—a two-day virtual event designed to explore how knowledge graphs and disease mapping can advance research in this field.

Read more
EU rare disease conference concludes in Warsaw with renewed focus on early diagnosis and collaborative research
April 14th, 2025
The two-day conference at the Medical University of Warsaw, held under the auspices of the Polish Presidency of the EU Council, concluded with a strong appeal for more integrated research, faster diagnostics, and closer cooperation between national and European policymakers.

Read more

“If we can remove some of the barriers to accessing education—both visible and invisible—then we could support people with rare diseases in the right way”

Freya2025-05-14T12:29:42+02:00May 14th, 2025|

My name is Sofie Skoubo, and I’m a PhD student at the Department of Public Health, Aarhus University, The Danish National Rehabilitation Center for Neuromuscular Diseases and cooperate with the Norwegian company No Isolation. Since 2020, I have worked with telepresence robots for children with cancer, neuromuscular diseases, and anxiety, and my research focuses on READ MORE

“I hope ERDERA solidifies the mindset that no single group—be it clinicians, patients, researchers, public authorities, or private entities—can succeed alone”

Freya2025-05-06T14:53:25+02:00May 7th, 2025|

My name is Alexandre Méjat. I’m a patient by birth; I’m affected by a rare disease called Bethlem myopathy. I’m also a scientist by training: I have a PhD in biology, and I represent AFM-Téléthon in ERDERA, which is a patient organisation from France dedicated to neuromuscular diseases—but more broadly to all rare diseases. READ MORE

New survey aims to give under-represented countries a stronger voice in rare-disease research

Jordi Vaque2025-04-24T12:49:56+02:00April 23rd, 2025|

A new questionnaire, “Promoting capacity-development actions” – has been released under one of the teams developing the European Rare Diseases Research Alliance (ERDERA) team that focuses on harmonization of the different national capacities. The goal is simple but urgent: to capture first-hand evidence of the funding gaps, technical hurdles and policy barriers that still keep READ MORE

Upcoming workshop: Unlocking the complexity of rare diseases through knowledge graphs

Freya2025-04-16T10:10:50+02:00April 15th, 2025|

Understanding the intricate biological mechanisms underlying rare diseases remains one of the greatest challenges in biomedical research. In response to this complexity, ERDERA is pleased to host the Rare Disease Maps Workshop—a two-day virtual event designed to explore how knowledge graphs and disease mapping can advance research in this field. READ MORE

EU rare disease conference concludes in Warsaw with renewed focus on early diagnosis and collaborative research

Jordi Vaque2025-04-15T12:29:24+02:00April 14th, 2025|

The two-day conference at the Medical University of Warsaw, held under the auspices of the Polish Presidency of the EU Council, concluded with a strong appeal for more integrated research, faster diagnostics, and closer cooperation between national and European policymakers. READ MORE

Rare Disease conference kicks off in Warsaw: Building momentum for a unified EU strategy

Jordi Vaque2025-04-15T12:29:01+02:00April 10th, 2025|

Goverment officials, medical experts, patient organisations, and top researchers gathered today at the Medical University of Warsaw for the opening of “Towards an EU Action Plan on Rare Diseases.” Held under the auspices of the Polish Presidency of the EU Council and co-organised by the Polish Ministry of Health, the European Economic and Social Committee READ MORE

“Knowing there’s a place where someone will listen, understand, and guide you towards what’s best for your child is invaluable.”

Jordi Vaque2025-04-09T10:17:44+02:00April 8th, 2025|

My name is Dorica Dan. I’m from Romania, and I serve as the President of the Romanian Prader-Willi Association (RPWA)—my daughter has Prader-Willi Syndrome. I’m also the President of the Romanian National Alliance for Rare Diseases (RONARD) and the Romanian Rare Cancers Association. In addition, I am currently Vice-President of EURORDIS – Rare Diseases Europe. READ MORE

ERDERA training for young advocates for rare diseases – Open call for participants

Freya2025-04-23T12:03:09+02:00April 3rd, 2025|

ERDERA is excited to announce a unique two-day, in-person training event in Athens, Greece, designed for young advocates for rare diseases aged 12 to 18 years with essential knowledge and skills to actively contribute to paediatric clinical research. READ MORE