BULGARIAN ASSOCIATION FOR PROMOTION OF EDUCATION AND SCIENCE

Their core work

BAPES is a Bulgarian NGO specializing in rare disease patient advocacy, community education, and patient empowerment — their primary domain is confirmed by their operational website at raredis.org. They function as a civil-society bridge in large European research consortia, bringing the patient and community perspective into projects otherwise dominated by universities and clinical centers. In SCREEN4CARE they contribute as an active participant alongside biotech firms and academic hospitals, supporting community engagement around newborn genetic screening for rare diseases. Their work spans raising public awareness, facilitating patient access to emerging diagnostic tools, and ensuring research programs remain connected to real patient needs in Southeast Europe.

What they specialise in

How they've shifted over time

In their earlier H2020 engagement (EJP RD, from 2019), BAPES operated across the broad rare disease ecosystem — patient empowerment, FAIR data principles, funding frameworks, public-private partnerships, and training. This reflects a generalist advocacy and capacity-building role within a very large programme. By their second project (SCREEN4CARE, from 2021), the focus narrowed sharply to specific diagnostic technologies: newborn screening, genetic testing, electronic health records, and machine-learning tools for phenotyping — suggesting BAPES is moving from ecosystem-level advocacy toward direct participation in clinical and digital innovation pipelines.

BAPES is evolving from broad rare disease advocacy toward active participation in clinical-digital research, positioning themselves as a patient-side partner in screening and diagnostics projects.

How they like to work

BAPES has never led an H2020 project — all participation is as third party or consortium member — which is typical for patient advocacy organizations that are brought in to provide legitimacy, community access, and dissemination reach rather than technical leadership. Despite only two projects, they appear connected to 180 partners across 35 countries, almost entirely a function of EJP RD's massive pan-European programme structure. Expect them to play a community engagement, dissemination, and patient liaison role rather than a research or technical execution role within any consortium.

BAPES has touched 180 unique consortium partners across 35 countries, though this breadth is largely inherited from EJP RD — one of the largest rare disease research programmes in Europe with over 130 participating institutions. Their practical working network is likely a subset of this, centred on rare disease organizations, patient groups, and clinical research teams across Europe.

What sets them apart

BAPES is one of very few rare disease patient-focused civil society organizations from Southeast Europe active in H2020 research consortia, making them a credible bridge between Bulgarian and regional patient communities and mainstream European clinical research. For consortium builders, they fill a specific gap: patient organization representation from a EU member state that is underrepresented in rare disease research networks. Their operational website raredis.org signals genuine on-the-ground activity rather than a paper participant.

Highlights from their portfolio

• SCREEN4CARE
  This is BAPES's only directly funded project (EUR 113,250) and represents their most technically advanced engagement — combining newborn genetic screening, electronic health records, and machine-learning phenotyping to shorten rare disease diagnosis timelines.
• EJP RD
  The European Joint Programme on Rare Diseases is one of the largest coordinated rare disease research initiatives in H2020 history, and BAPES's inclusion as a third party connects them to an ecosystem of 130+ institutions across 35 countries.