FONDAZIONE ITALIANA SINDROMI MIELODISPLASTICHE ETS

Their core work

FISIM ETS is an Italian disease foundation entirely dedicated to myelodysplastic syndromes (MDS), a group of rare bone marrow disorders that can progress to leukemia. Their core work is bridging patient advocacy and clinical research — they bring disease-specific expertise, patient community access, and real-world clinical knowledge to large pan-European research consortia. In H2020, they contributed to both phases of the HARMONY Alliance, one of Europe's largest big data platforms for hematological malignancies, helping populate and validate patient-level datasets covering MDS, leukemia, lymphoma, and multiple myeloma. Their value in a consortium is not infrastructure but disease depth: a focused foundation that speaks for a specific patient population and holds ground-level knowledge of MDS disease course, treatment outcomes, and unmet clinical needs.

What they specialise in

How they've shifted over time

In their first project (HARMONY, 2017), FISIM's contribution centered on specific disease categories — MDS, leukemia, lymphoma, multiple myeloma, childhood cancer — and on feeding real-world patient data into a newly built big data platform. By HARMONY PLUS (2020), the focus had shifted from cataloguing disease types to extracting value from data: keywords moved toward data analysis, molecular genetics, digital health outcomes, business models, and translational medicine. This is a clear arc from data contributor to analytical participant — from populating a platform to helping interpret and commercialize what it produces.

FISIM is moving from a passive disease registry contributor toward active involvement in deriving translational and digital health insights from hematology big data, which suggests growing analytical and dissemination capability within their patient-focused mission.

How they like to work

FISIM has never led an H2020 project — they join exclusively as participants, functioning as a specialist node within large disease alliances rather than as a consortium architect. Both their projects are part of the same HARMONY family, a very large multi-partner platform, which generated 57 unique consortium connections across 13 countries from just two participations. This points to an organization that is deeply embedded in one major network rather than spread across many independent projects — a loyal, focused partner rather than a broad consortium builder.

FISIM has built connections with 57 unique partner organizations across 13 countries through only 2 projects, a high ratio that reflects the scale of the HARMONY Alliance consortium. Their network is primarily concentrated in European hematology and oncology institutions, hospitals, and rare disease foundations.

What sets them apart

FISIM ETS is one of very few organizations in H2020 that represents a single rare disease (MDS) from a patient foundation perspective — combining clinical knowledge with patient community access in a way that academic hospitals and biotech companies typically cannot replicate. Their long-term involvement in the HARMONY Alliance (both phases, 2017–2024) means they hold seven years of accumulated institutional knowledge about how pan-European hematology data platforms operate, what data quality issues arise with MDS-specific records, and how to navigate multi-stakeholder research governance. For a consortium targeting rare hematological malignancies or building real-world evidence platforms, FISIM offers a legitimacy and patient-centricity angle that pure research institutions lack.

Highlights from their portfolio

• HARMONY
  FISIM's largest funded project (EUR 226,623) and one of Europe's flagship hematology big data alliances, running 6 years and covering six major blood cancer types with real-world patient data from multiple countries.
• HARMONY PLUS
  The direct continuation of HARMONY with an expanded scope into molecular genetics, digital health outcomes, and a business model dimension — marking FISIM's evolution from data contributor to translational research partner.