European Patients’ Rights Day

On 18 April, we mark European Patients’ Rights Day – an important occasion dedicated to raising awareness of patients’ rights and promoting their protection across Europe. Established by Cittadinanzattiva/Active Citizenship Network in cooperation with various European citizens' organisations, the day is grounded in the European Charter of Patients’ Rights, which sets out 14 fundamental rights that should be recognised and respected in all healthcare systems. 

What Is European Patients’ Rights Day and Why Does It Matter? 

This annual day of action reminds us that every person deserves access to safe, respectful and high-quality healthcare. It encourages all those involved in healthcare – from policymakers and professionals to patient advocates and citizens – to work together to protect and advance these rights. 

Each year, the day is marked with public events, conferences and initiatives across Europe, often supported by institutions such as the European Parliament and the European Economic and Social Committee. It serves both as a moment to highlight progress and a platform to drive further improvements in patient care. 

A Shared Commitment to Patients' Rights 

At FH Europe Foundation, we strongly support the principles behind European Patients’ Rights Day. Our work – focused on improving awareness, diagnosis and treatment of inherited lipid conditions such as familial hypercholesterolaemia (FH), Homozygous FH (HoFH), elevated Lp(a) and Familial Chylomicronaemia Syndrome (FCS) – is rooted in the belief that all patients deserve timely, accurate and person-centred care. 

• Common goals: Both the Day and our Foundation advocate for better outcomes and more equitable access to healthcare. 

• Policy and advocacy: We collaborate with European institutions to support policies that put patients first, mirroring the objectives of this day. 

• Awareness and education: We raise awareness of inherited lipid conditions, empowering people to understand their health and seek appropriate care. 

• Working together: Through collaboration with patients, healthcare professionals and policymakers, we aim to help shape a more inclusive healthcare environment. 

The 14 Fundamental Patients’ Rights 

Outlined in the European Charter of Patients’ Rights, these rights form the backbone of a healthcare system that respects human dignity and promotes equity: 

1. Right to Preventive Measures
   Access to services such as health education, screening and vaccinations that help prevent illness and support overall wellbeing.
2. Right of Access
   The right to receive the healthcare you need when you need it, without unjustified delay or discrimination. 
3. Right to Information
   Clear, accurate and complete information about your health status, treatment options and available services. 
4. Right to Consent
   Informed consent before any medical procedure or treatment – including information on risks, alternatives and likely outcomes. 
5. Right to Free Choice
   The freedom to choose your healthcare provider and make informed decisions about your treatment path. 
6. Right to Privacy and Confidentiality
   Respect for personal privacy and protection of medical records and information. 
7. Right to Respect of Patients’ Time
   Efficient care delivery with minimal waiting times and proper communication about delays or changes. 
8. Right to the Observance of Quality Standards
   Assurance that care is delivered according to professional standards and regularly evaluated. 
9. Right to Safety
   Protection from medical errors, infections and other avoidable harm during care. 
10. Right to Innovation
    Access to new treatments, technologies and research that can improve health outcomes. 
11. Right to Avoid Unnecessary Suffering and Pain
    Appropriate pain management and compassionate care to reduce physical and emotional distress. 
12. Right to Personalised Treatment
    Treatment tailored to the individual’s medical needs, preferences and personal circumstances. 
13. Right to Complain
    The ability to file complaints, raise concerns and seek redress when care falls short of expectations. 
14. Right to Compensation
    Fair and timely compensation in cases of medical negligence or avoidable harm. 

Moving Forward 

European Patients’ Rights Day is a timely reminder of the essential role that rights-based care plays in creating resilient, patient-focused healthcare systems. At FH Europe Foundation, we remain committed to working with our partners across Europe and beyond, to ensure that the voices of patients – especially those living with inherited lipid conditions – are heard, valued and protected. 

By championing these rights together, we can help shape a future where all individuals receive the care, respect and support they deserve. 

As part of our contribution to this year’s European Patients’ Rights Day, we are also sharing personal reflections from our community – sharing some of there views on what these rights mean in their daily lives. Alongside each of the 14 rights, you’ll find links to stories, insights and testimonials from individuals living with FH and related conditions, highlighting how these rights play out in practice and where gaps still remain. 

These real-life experiences offer valuable context to the Charter and strengthen the call for health systems that truly put people first.