2nd International Conference on Clinical Research Networks: Connected for impact

December 9, 2025 - December 10, 2025
Hybrid event

ERDERA – the European Rare Diseases Research Alliance – is pleased to announce the upcoming 2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases, co-organised in collaboration with Rare Disease International and the International Rare Diseases Research Consortium (IRDiRC).

Details:

  • Date: 9–10 December 2025
  • Format: Hybrid – online and in-person participation available
  • Registration: here.
  • Venue: Marsilius College, Heidelberg, Germany
  • Programme: see below.

 

PROGRAMME

Times are in CET.

 

Tuesday December 9th, 2025

 

12.00 – 1.00 p.m. –  Light lunch reception

1.00 – 2.00 p.m. – Plenary session: Opening Session – Setting the scene

  • David Pearce, International Rare Diseases Research Consortium (United States of America)
  • Alexandra Heumber Perry, Rare Diseases International (France)

2.00 – 3.30 p.m. –  Plenary session 1:  Global efforts in Real World Evidence (RWE) and data collection

Session Chair: Franz Schaefer, Heidelberg University Hospital

  • European Medicines Agency (The Netherlands) (TBC)
  • Cécile Ollivier, Critical Path Institute (The Netherlands)
  • Prof. Thomas Klockgether, University of Bonn (Germany)
  • Pat Furlong, Parent Project Muscular Dystrophy

3.30 – 4.00 p.m. – Coffee and networking break

4.00 p.m. – 6.00 – Plenary session 2: New approaches in diagnostics & clinical research

Session Chair: Yanis Mimouni (Associacte Directo, Regulatory Science, C-Path)

  • Tudor Groza, Agency for Science, Technology and Research A*STAR, (Singapore)
  • Yong Chen, Lancet Commission on Rare Diseases, (United States of America) TBC
  • TBC, Leiden Medical University (The Netherlands)
  • Alexander Hoischen, Groningen Medical University (The Netherlands)
  • Dustin O’Dell, SymetryML (USA)

7.00 – 8.30 p.m.  – Networking reception

 

Wednesday December 10th, 2025 

 

9.00 – 11.00 a.m. – Parallel workshops

PARALLEL WORKSHOP 1:  Learnings from Low and Middle-Income Countries: Ensuring Representation in Clinical Research Data and Registries 

Session Chairs: Daria Julkowska, INSERM, Monica Drum, Rare Diseases International (RDI)

  • Chris Hendriksz, A Rare Cause (South Africa)
  • Roberto Giugliani, Federal University of Rio Grande do Sul (Brazil)
  • Robin Sarfati, Tekkare (France)
  • Prof. Mohamed Hassany, Assistant Minister of Health for Projects and Public Health Initiatives, Ministry of Health and Population (Egypt)

PARALLEL WORKSHOP 2: Rules of engagement in multi-stakeholder pre-competitive environments

Session Chairs: Samantha Parker IRDiRC vice chair; Heidrun Hildebrand, Pediatric Development Alliance Manager

  • Mark Turner, CEO conect4children Stichting
  • Cécile Ollivier, Managing Director, cPATH Europe
  • Begoña Nafria Escalera, Head of Patient Engagement in Research Area, Paediatric Cancer Center Barcelona – PCCB, Institut de Recerca Sant Joan de Déu
  • Rebecca Leary, Senior Project Manager, Newcastle University, The John Walton Muscular Dystrophy Research Centre
  • Together4Rare (TBC)

10.00 – 11.30 a.m. – Coffee and networking break

11.30 a.m. – 12.30 p.m. – Plenery session 3:  Reporting back from parallel workshops & discussion

  • Alexandra Heumber Perry, Rare Diseases International (France)
  • Daria Julkowska, European Rare Diseases Research Alliance (France)
  • Heidrun Hildebrand, European Federation of Pharmaceutical industries and associations (Germany)

12.30 a.m. – 13.30 p.m. – Lunch break

13.30 a.m. – 3.00 p.m. – Plenery session 4:  Global Trials, Local Impact: Empowering access and engagement in international clinical research, role of patients and broad partnerships

Session Chair: Alexandra Heumber Perry, Rare Diseases International

  • Dr. Sudheendra Rao, Organisation for Rare Diseases India
  • Kelly Du Plessis, Rare Diseases South Africa
  • Begoña Nafria Escalera, Head – Patient Engagement in Research Area, Pediatric Cancer Center Barcelona, Sant Joan de Deu SJD, Spain; Conect4Children Stichting
  • Dr Roberto Guigliani, Federal University of Rio Grande do Sul (Brazil)

3.00 – 3.30 p.m. – Coffee and networking break

3.30 – 5.00 p.m. – Plenery session 5: Global Networks and Models of Care in high income and LMIC – The Duchenne experience

Session Chair: Gareth Baynam, Rare Care Center

  • Mark Turner, Conect4Children Stichting (United Kingdom)
  • Anna Thetford, Rare Care Center, (Australia)
  • Karolína Podolská, Program manager of Accredited Duchenne Centers Program

5.00 – 5.30 p.m.  – Closing of the conference

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