Monthly Insights February

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RoALD Monthly Insights - February 2026

Rare Disease Month | Rare Disease Day (28 February)

RoALD motto: Our patients. Our goal. Raising awareness to improve survival and survivorship.

February is Rare Disease Month, and for RoALD it was a month of continuity in screening, strong multidisciplinary presence and a clear message on Rare Disease Day (28 February): rare hepatology needs structured pathways, registries, and integrated care.

SHIELD-BD: screening continues into 2026

SRGH Project SHIELD-BD continues in 2026, building on the strong momentum from 2025. To date, 109 patients were screened in 2025, reinforcing RoALD’s commitment to earlier identification and streamlined referral pathways for hepatitis B and D in vulnerable populations.

ECCO 2026 (Stockholm): “Holistic IBD Care” - why it matters for hepatology

At ECCO’26 (18–21 February 2026, Stockholm), the congress theme “Holistic IBD Care” highlighted patient-centred, multidisciplinary IBD management across basic science, translational medicine, and clinical practice. (ecco-ibd.eu)

The hepatology bridge: PSC–IBD as a distinct, higher-risk phenotype

A key message for RoALD this Rare Disease Month is the growing evidence that PSC with concomitant IBD behaves as a distinct, higher-risk clinical phenotype. In a large U.S. real-world cohort (Ibrahim A, Rockey DC. Clinical Outcomes in Patients with Primary Sclerosing Cholangitis With and Without Inflammatory Bowel Disease. Dig Dis Sci. 2026 Feb 6. doi: 10.1007/s10620-026-09699-8. Epub ahead of print. PMID: 41649752.), patients with PSC-IBD had higher rates of liver-related complications and were more likely to undergo liver transplantation compared with PSC without IBD, after matching for baseline characteristics.
This reinforces the need for tight hepatology-IBD collaboration, risk-based monitoring, and structured surveillance strategies in PSC-IBD.

Orphan therapies & rare diseases: RoALD at “360Radar – European Innovation in Rare Diseases”

RoALD participated in “360Radar - European Innovation in Rare Diseases: Orphan therapies - research, medical practice and public policy”, held on 19 February 2026 at Crowne Plaza, Bucharest.
The programme brought together perspectives on expert centres, registries, access to innovation, patient voice, and advanced screening approaches.
Importantly, the agenda also included a dedicated hepatology-relevant topic (cholangitis: diagnostic criteria and therapeutic strategies).

What we presented: Autoimmune biliary cholangitis (PBC & PSC) — challenges and therapeutic strategies

At the symposium, Assoc. Prof. Dr. Speranța Iacob (UMF Carol Davila; Fundeni Clinical Institute) delivered an update on Primary Biliary Cholangitis (PBC) and Primary Sclerosing Cholangitis (PSC), focusing on current challenges and practical therapeutic strategy.

Key take-home messages

  • PBC and PSC are distinct diseases with shared unmet needs. PBC is typically female-predominant and has approved first-line therapy (UDCA) with second-line options depending on country/guideline (seladelpar, elafibranor); PSC is frequently associated with IBD and still lacks an approved disease-modifying medical therapy.
  • PBC epidemiology is rising globally. Updated pooled estimates highlighted a global prevalence of 18.1/100,000 and incidence 1.8/100,000 person-years, with increasing prevalence over time and geographical variability.
  • PSC therapeutic pipeline is active, but there is still no approved therapy that modifies disease course, underscoring the importance of expert follow-up and structured surveillance.
  • A national PBC/PSC registry is urgently needed to capture real-world epidemiology, enable benchmarking and quality improvement, integrate PRO/QoL in routine care, and strengthen access to innovation and trials.

Rare Disease Day (28 February): why RoALD focuses on rare hepatology

On Rare Disease Day (28 February), we reaffirm RoALD’s commitment to patients living with rare liver diseases. Earlier recognition, structured referral pathways, and robust real-world data (including registries) are essential to improve both survival and long-term quality of life (survivorship).

FINAL - Save the Date (March 2026) - Do not miss

Two major RoALD events are coming in March, please save the dates:

  • 3rd Romanian Forum on Metabolic Hepatology – 12 March 2026
    “Transforming MASLD care through multidisciplinary action and long-term vision”
  • 13th “Update on Hepatology” Course – 13–14 March 2026 (Crowne Plaza, Bucharest)
    “Personalized management of liver diseases in the flow of hepatology practice”

Watch now: 2025 video retrospectives (films)