Bulgaria hosted the first in-person National Alignment Board of European Rare Diseases Research
Alliance (ERDERA), the Workshop for Underrepresented Countries and the annual meeting of International
Rare Diseases Research Consortium (IRDiRC), in Sofia from 17th to 19th March.
Bulgaria participates in the ERDERA with three organizations – National Science Fund at the Ministry of Education and Science, Medical University-Sofia and Rare Diseases Bulgaria, the national alliance of patient organisations.
The National Alignment Board involves representatives of all National Mirror Groups of countries participating in ERDERA.
The NAB meeting was opened by presentations and greetings from Prof. M. Orbetzova, member of the
Executive Board of National Science Fund, Ministry of Education and Science and Director of University
Hospital of Endocrinology „Acad.I.Penchev”; Prof. Ivanka Dimova, Academic Coordinator in JARDIN
project and Head of Genome Diagnostics Laboratory, and Prof. Radka Kaneva, Member of the Governing
Board of ERDERA and Head of Molecular Medicine Center.
The sessions outlined ERDERA’s multi-year planning and the added value NMGs bring to national
ecosystems, strengthening the national rare disease communities, sharing good practices and needs, aligning to international and global research activities.
The joint meeting of ERDERA and IRDiRC on 18 th of March was opened by Assoc. Prof. Gribnev, MD, PhD, the Deputy Minister of health. He expressed the support of our caretaker government to the
activities of the experts on national level and the active involvement in collaborative research in ERDERA.
Prof. Ivaylo Turnev, leading two national expert centers, part of ERN, and Dr. Petia Stratieva, leading the Rare Diseases Bulgaria patient organisation, shared the perspectives of clinical experts and patients, and identified the challenges in the national health care system.
They pointed out the role of European cooperation through ERDERA to support the development and
implementation of a national plan or strategy for rare disease, enhance clinical research, advance exchange of best practices, stimulate training and education.
This was a great opportunity to share information about the NMGs and identify further synergies between
ERDERA activities and IRDiRC’s global research missions, engage in working groups that could influence
diagnostics, trial design and the development of new therapies.
The workshop dedicated to Underrepresented Countries (UCs) focused on strengthening participation in
research and innovation across widening and low participation countries.
Participants discussed the concept of UCs and development of formal guidelines for inclusion, shared good practices, as well as the role of pre-award offices to boost the participation of researchers from UCs in international projects. During this workshop Prof. Kaneva presented the achievements and good practices in the work of the Bulgarian Ophtalmogenetic group including both leading clinical experts and researchers.
