#PBCDAY 2026 | PBC AWARENESS MONTH Primary Biliary Cholangitis (PBC) is a rare, chronic and progressive liver disease. For many people, timely diagnosis, effective treatment and regular monitoring can help change the course of the disease. But when PBC progresses, the consequences can become much more serious. Advanced disease can lead to **cirrhosis and liver failure. People with PBC who develop cirrhosis are also at increased risk of hepatocellular carcinoma (HCC). And for selected patients with end-stage liver disease, or in certain cases of HCC, liver transplantation can become a life-saving treatment option. This is why PBC cannot be considered through only one policy lens. PBC connects the European agendas on rare diseases, cancer and transplantation. Europe’s Beating Cancer Plan already addresses the cancer pathway from prevention and early detection through diagnosis, treatment and quality of life. European cooperation on organ donation and transplantation has similarly focused on improving organ availability, the efficiency and accessibility of transplant systems, and the quality and safety of transplantation. The shortage of available organs remains a major limitation. For ELPA, these policies should connect around the person. Diagnose PBC earlier. Monitor treatment response. Optimise treatment when needed. Prevent avoidable progression. Identify and monitor those at risk of HCC. Ensure access to specialist and multidisciplinary care. And when transplantation becomes necessary, ensure timely and equitable access. A stronger European approach to rare diseases should recognise this full patient journey Because the objective should not simply be to manage PBC after complications appear. The objective should be to prevent as many complications as possible. And when advanced disease, liver cancer or the need for transplantation cannot be prevented, every patient should have access to the best possible care — regardless of their country, postcode or socioeconomic situation. #Rarediseasepolicy. #Cancerpolicy. #Transplantationpolicy. For patients, these are not separate worlds. They are different parts of the same journey. On PBC Day 2026 and throughout PBC Awareness Month, ELPA calls for Europe to connect these agendas and turn scientific progress into earlier action, better treatment, equal access and better futures. MORE OPTIONS. MORE HOPE. MORE TIME. From rare disease to cancer prevention. From treatment to transplantation. From European policy to better lives. #PBCDay2026 #PBCAwarenessMonth #PBC #PrimaryBiliaryCholangitis #RareLiverDisease #RareDiseases #LiverCancer #HCC #CancerPrevention #EUCancerPlan #LiverTransplantation #OrganDonation #EqualAccess EU Health and Food Safety WHO Regional Office for Europe EURORDIS-Rare Diseases Europe

ELPA #PBCCALLTOACTION 2026 MORE OPTIONS. MORE HOPE. MORE TIME. From awareness to action — building better #PBCcare across Europe #PBCMonth is not only about raising awareness. It is about turning awareness into earlier diagnosis, better monitoring, better symptom management, more treatment options, stronger patient voice, equal access and European action. ELPA is bringing these priorities together in one #EuropeanPBCagenda: #DIAGNOSIS Earlier recognition. Earlier referral. Better starts. #TREATMENT The right treatment, for the right patient, at the right time. #MONITORING Know the response. Reassess risk. Act when treatment goals are not being achieved. #SYMPTOMS & #QUALITYOFLIFE Pruritus, fatigue, sleep, mental wellbeing and daily life must matter in PBC care. #PATIENTVOICE People living with PBC must help shape research, treatment decisions, care pathways and health policy. #INNOVATION Scientific progress is creating new possibilities — but innovation matters only when it reaches patients. #EQUALACCESS Where a person lives in Europe should not determine access to diagnosis, specialist care, monitoring or appropriate treatment. #RAREDISEASEPOLICY PBC must be recognised within the wider European rare disease agenda and future EU Rare Disease Action Plan. #RESEARCH & #PATIENTEVIDENCE Clinical evidence and real-world patient experience must work together to define better PBC care. #SHAREDDECISION-MAKING Patients should understand their disease, their treatment response and the options available to them. #PREVENTINGPROGRESSION Earlier diagnosis, appropriate treatment and continuous monitoring can help reduce the risk of advanced liver disease, complications and transplantation. #EUROPEANCOLLABORATION Patients, hepatologists, researchers, policymakers, healthcare systems and patient organisations must work together. MORE #OPTIONS → MORE #HOPE → MORE #TIME → MORE #VOICE → EQUAL #ACCESS #THEELPAACTIONISCOMING During PBC Month 2026, ELPA will bring together the patient community, leading European experts and key stakeholders to move the conversation from awareness to action. Through the ELPA PBC Events, patient advocacy, scientific dialogue and European policy engagement, we will ask one central question: How can Europe turn scientific progress in PBC into better outcomes for every person who needs it? Our goal is clear: A EUROPE WHERE EVERY PERSON WITH PBC HAS MORE OPTIONS. MORE HOPE. MORE TIME. MORE VOICE. EQUAL ACCESS. #PBCDAY | #PBCMONTH2026 @OliverVarhelyi @hans_kluge