A Parceria Europeia para as Doenças Raras – ERDERA, no âmbito do Work Package 24 – Fostering engagement of underrepresented countries, coordenado pela Agência de Investigação Clínica e Inovação Biomédica (AICIB), convida investigadores, clínicos, representantes e organizações de doentes, financiadores e autoridades nacionais de países sub-representados a juntarem-se a um workshop online Knowledge Exchange Workshop dedicado a fortalecer a colaboração em investigação e inovação em Doenças Raras por toda a Europa.
O Workshop realizado online nos dias 20 e 21 de novembro de 2025, entre as 09:00 e as 13:00 (CET). A inscrição é gratuita, mas será dada prioridade para participantes de países sub-representados.
Faça a sua inscrição aqui.
Os objetivos deste Workshop serão:
▫️ Explorar novos dados do inquérito da ERDERA que abrange mais de 30 países
▫️ Partilhar boas práticas entre doentes, clínicos, investigadores e financiadores
▫️ Co-criar soluções práticas para melhorar a inclusão, o networking e o desenvolvimento de capacidades
Os resultados contribuirão para as orientações da ERDERA a nível nacional, promovendo um acesso mais equitativo à investigação e um diagnóstico mais rápido para pessoas que vivem com uma doença rara.
Para mais informações, consulte o website da ERDERA aqui.
Programme
November 20th, 2025
08:30 – 09:00
Launching for on-line participants
09:00 – 09:15
Presentation of workshop aims and explanation of the foreseen activities
Birutė Tumienė, Assoc.Prof., MD, PhD, Vilnius University, Faculty of Medicine, Head of the Division of Clinical Genetics and Genomics, Centre for Medical Genetics, Vilnius University Hospital Santaros Klinikos (Lithuania)
09:15 – 09:30
Overview of the survey on the needs of underrepresented countries (UC) in ERDERA T24.1
Birutė Tumienė, Assoc.Prof., MD, PhD, Vilnius University, Faculty of Medicine, Head of the Division of Clinical Genetics and Genomics, Centre for Medical Genetics, Vilnius University Hospital Santaros Klinikos (Lithuania)
09:30 – 09:45
Bridging the Innovation Divide in Europe: The Role of Alliance4Life in Fostering Research Excellence in Central and Eastern Europe
Karolis Ažukaitis, Assoc. Prof., MD, PhD, Vice-Dean for Research at Vilnius University, Pediatric Nephrologist at Vilnius Univesity hospital Santaros klinikos (Lithuania)
09:45 – 10:15
Best practice examples from: Patients, clinicians/ researchers:
- EJPRD project from JTC 2020 ENISNIP
Robert Jech, Prof. MD, PhD, Head of the Center for interventional treatment of movement disorders Department of Neurology, 1st Faculty of medicine, Charles University and General University (Czech Republic)
- EJPRD project from JTC 2020 AAK-INSIGHT and network support scheme event (European Aniridia Conference 2020)
Arvydas Gelžinis, MD, PhD, Head of the Department of Pediatric Eye Diseases, The Hospital of Lithuanian University of Health Sciences Kauno klinikos, JTC ‘SeeMyLife: Holistic mixed approaches to capture the real life of children with Rare Eye Diseases’
Irma Bylė, President of Aniridia Lithuania Association (Lithuania)
10:15 – 12:45
Parallel workshops (supported with MIRO): What are the main challenges for the networking of underrepresented countries and their engagement into rare disease research?
12:45 – 13:00
Reconvening for the first feedback to plenary
November 21st, 2025
08:30 – 09:00
Launching for on-line participants
09:00 – 10:00
Best practice examples from: Funding agencies: presentation of Research Council of Lithuania (LMT)
Živilė Ruželė, PhD, Advisor at the International Cooperation Unit at Research Council of Lithuania, ERDERA Networking Support Scheme Secretariat (Lithuania)
ERDERA Workstreams, measures for engagement of underrepresented countries:
- Diagnostic research workstream (WP6 and WP8)
Laima Ambrozaitytė, Prof. PhD, Sen. medical geneticist, Laboratory for Molecular Genetics and Cytogenetics, Centre for Medical Genetics, Vilnius University Hospital Santaros Klinikos (Lithuania) (To be confirmed)
- Education and training (WP20)
Birutė Tumienė, Assoc.Prof., MD, PhD, Vilnius University, Faculty of Medicine, Head of the Division of Clinical Genetics and Genomics, Centre for Medical Genetics, Vilnius University Hospital Santaros Klinikos (Lithuania)
- National Mirror Groups (WP23)
Madara Auzenbaha, Assoc. Prof. Dr. MD lead. researcher in Riga Stradins University Scientific Laboratory of Molecular Genetics, Head of Rare Diseases Coordination Center, Children’s Clinical University Hospital of Riga (Latvia)
10:00 – 12:45
Parallel workshops (supported with MIRO): what are the main solutions to enhance networking of underrepresented countries and their engagement into rare disease research?
12:45 – 13:00
Wrap-up and next steps
