PBC Day – 13 September 13, 2026
YOU ARE NOT INVISIBLE.
PBC, or primary biliary cholangitis, is a rare chronic liver disease that often remains invisible.
You cannot tell by looking at someone how much fatigue, meaning severe disease related exhaustion, itching, pain, dry mucous membranes, worries or uncertainty can affect everyday life.
The strength it takes to live with a chronic disease every day also often remains invisible.
Yet behind every diagnosis is a person.
We see you. We listen to you. Your voice matters.
For Swiss HePa, “You are not invisible” means more than providing information and raising awareness. The experiences of patients and their families must be heard and included wherever decisions are made about research, healthcare, approval, reimbursement, access to treatment and health policy.
Swiss HePa takes action.
🌍 Together with 22 other international patient organisations, Swiss HePa supports the international PBC Open Letter.
Our shared message is clear: Patients should not only be part of the discussion, but part of the solution.
📨 On 13 September 2026, International PBC Day, Swiss HePa will send the PBC Open Letter together with our Position Paper and a personal covering letter directly to Swissmedic, the Federal Office of Public Health and Federal Councillor Elisabeth Baume-Schneider.
In this way, we bring the voices of patients directly to those responsible for important decisions.
🇨🇭 In our Swiss HePa Position Paper 2026, we present five clear priorities:
1 | Decide with us, not about us
Patients and patient organisations must be involved early and in a binding way. Their participation must not be merely symbolic.
2 | Diagnose earlier and provide better care
Diagnostic pathways must become shorter. Greater knowledge about rare liver diseases, clear referral pathways and specialised, interdisciplinary care are needed.
3 | Innovation is only truly innovation when it reaches the patient
Approval alone is not enough. New diagnostic options and treatments only help when patients receive them in time and their costs are reliably reimbursed.
4 | Learn internationally and act in Switzerland
Findings from international research, medical recommendations, regulatory authorities and patient networks must be used consistently in Switzerland.
5 | Strengthen patient organisations sustainably
Independent patient advocacy requires reliable frameworks, appropriate compensation for participation and sustainable long term funding.
These priorities apply to people living with PBC and other rare liver diseases. At the same time, they help improve healthcare and health policy conditions in Switzerland for people living with rare and chronic diseases as well as cancer.
Our goal is clear: Greater visibility and understanding. Earlier diagnoses. Better care. Fair access to new treatments. More research. And a strong patient voice.
Patient participation must not end with listening. It must change decisions and make a tangible difference in patients’ lives.
YOU ARE NOT INVISIBLE.
Swiss HePa – Swiss Liver Patients Association
UN-Resolution 80/117, in particular paragraph 54:
WHO Declaration und WHO-Resolution 2026 about steatosis:
https://apps.who.int/gb/ebwha/pdf_files/EB158/B158_R1-en.pdf