The Patient Engagement Open Forum (PEOF) 2025, set to take place in Baveno, Italy, June 10-12, 2025, is more than another event on the healthcare calendar. It is a pivotal gathering where global champions of patient engagement come together to shape the future of inclusive, patient-centred healthcare systems. For the FH Europe Foundation Community, this event is not only relevant—it is essential. 

A Platform for Co-Creation and Advocacy 

PEOF 2025 is designed as a space for provocative co-creation, where patients, advocates, healthcare professionals, researchers, and policymakers collaborate to challenge the status quo and co-design solutions that reflect real-world needs. For a community like FH Europe Foundation —dedicated to improving the lives of individuals and families affected by familial hypercholesterolaemia (FH) and other inherited lipid conditions—this is a golden opportunity to ensure that the voices of those living with rare and underdiagnosed conditions are heard and acted upon. 

FH Europe Foundation Will Be There – In Person 

We are proud to share that FH Europe will be attending PEOF 2025 in person. Our presence at this important event underscores our commitment to active participation in shaping the future of patient engagement. It’s a chance to represent our community, share our insights, and engage directly with global stakeholders. 

Why It Matters for FH Europe 

1. Amplifying the Patient Voice: FH Europe Foundation has long championed the importance of patient-led advocacy. PEOF 2025 offers a global stage to share lived experiences, highlight unmet needs, and influence the development of more inclusive health policies. 

1. Building Strategic Alliances: The event brings together a diverse network of stakeholders. For FH Europe Foundation, this is a chance to forge new partnerships, strengthen existing collaborations, and align with like-minded organisations working towards equitable access to care. 

1. Driving Innovation in Engagement: As healthcare systems evolve, so too must the ways in which patients are engaged. PEOF 2025 will explore cutting-edge approaches to engagement that FH Europe Foundation can adapt and implement across its network of national patient organisations. 

1. Shaping Policy and Practice: With discussions focused on real-world impact, the insights gained at PEOF can directly inform FH Europe Foundation’s advocacy strategies at both national and European levels. 

Join Online from Anywhere 

You can still be part of the conversation. PEOF 2025 offers a series of virtual sessions to ensure global accessibility: 

🔹 PEOF 2025 Online Events Overview
🔹 PEOF Initiative Page – Learn More About the Movement 

Looking Ahead 

Participation in PEOF 2025 is not just about being present—it’s about being proactive. It’s about ensuring that the unique challenges faced by those with FH and related conditions are recognised in broader conversations about patient engagement and healthcare transformation. 

As we look to the future, events like PEOF 2025 remind us that true progress in healthcare begins with listening to and learning from patients. For the FH Europe Foundation Community, this is a call to action—to engage, to collaborate, and to lead. 

FH Europe Foundation, on behalf of the European Cardiovascular Health Alliance (EACH), is proud to invite you to a two-part Public Advocacy Webinar Series dedicated to unlocking the potential of the EU Council Conclusions on Cardiovascular Health and exploring the upcoming European Cardiovascular Health Plan.

Cardiovascular diseases (CVDs) are the leading cause of death in Europe, responsible for nearly 4 million deaths annually. Recognising the urgency, the Council of the EU adopted landmark conclusions in December 2024, calling for coordinated prevention and care strategies. The next day, the EU Commissioner for Health announced its intention to develop a comprehensive Cardiovascular Health Plan.

These webinars aim to equip patients, advocates, professionals, and organisations with the tools and insights needed to take action at both EU and national levels.

You will learn:

• What Council Conclusions are and how they influence policy
• How the new EU CVH Plan fits into the broader health agenda
• What civil society, patient groups, and national organizations can do now
• Real examples of advocacy already in motion

Speakers:

• Kitti Almer – Public Health Attaché, Hungary to the EU (Chair of the drafting group)
• Joanna Ten-Kate – Global Heart Hub
• James Kennedy – European Society of Cardiology
• Sophie Millar – European Society of Cardiology
• Magdalena Daccord - FH Europe Foundation, who will moderate the sessions.

Choose your session:

To accommodate different schedules and reach as many people as possible, we’re offering two webinar dates with identical content and different representatives from ESC.

• Webinar 1: Friday, May 30, 2025
  👉 [Register for May 30]
• Webinar 2: Monday, June 16, 2025
  👉 [Register for June 16]

⏰ Duration: 60 minutes (incl. Q&A)
🗣️ Language: English
🎟️ Open to the public – patients, advocates, professionals, policymakers

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By attending, you’ll gain the knowledge and tools to become part of a broader European movement for cardiovascular health.

Together, let’s translate policy into progress.

Part of the Data Saves Lives Initiative 

The European Patients’ Forum (EPF) has launched a new toolkit to help people understand the European Health Data Space (EHDS). This is part of the Data Saves Lives initiative. 

What is the European Health Data Space (EHDS)? 

The EHDS is a major EU Regulation that aims to give every EU citizen access to their health data – wherever they are in the EU, and to ensure that the data can move with them, no matter where in the EU they go. 

A recent webinar hosted by EPF explained the EHDS journey. Our ambassadors took part in the training, and here are their key takeaways.

What Will Change? 

• All EU countries will use electronic health records (EHR). 
• Patients can access their medical data anytime, anywhere – digitally and free of charge. 
• Hospitals, GPs, pharmacies, and labs will be better connected. 
• Your health information (like medicines, allergies, test results) can be securely shared with doctors – even in another EU country, if you agree. 

Example: If you fall ill on holiday in Spain, a doctor there can access your records (with your permission) to give you safe and effective care. 

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Two Ways Your Data Can Be Used 

1. Primary Use – For Your Own Care

Examples: 

• Your GP prescribes medicine.
• You get an X-ray.
• You are admitted to the hospital.

This data can be shared with other healthcare providers with your permission. You stay in control by: 

• Seeing who accessed your data.
• Correcting any mistakes.
• Hiding certain information if you wish.

2. Secondary Use – For Research, Policy, Innovation

Examples: 

• Research into rare diseases.
• Improving hospital care or medicines.
• Health policy planning.

Your data is anonymised or pseudonymised (your name is removed). You can say no to this kind of use.
Note: In emergencies like pandemics, exceptions may apply. 

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Your Rights & Privacy 

• You decide who can see your data. 
• You can opt out of secondary use. 
• All data use follows strict GDPR privacy rules. 
• In emergencies, your data can be accessed to save lives. 

Who Oversees the EHDS? 

Each EU country will have two main bodies: 

1. Digital Health Authorities (DHA) – for primary care 
2. Ensure your data is used safely. 
3. Handle complaints. 
4. Health Data Access Bodies (HDAB) – for secondary use 
5. Approve access for trusted researchers. 
6. Work with patient groups and publish reports. 

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What Can Patient Organisations Do? 

• Explain EHDS rights and benefits to members. 
• Help people with low digital or health literacy. 
• Offer support via helpdesks or email. 
• Share patient data (e.g. from registries). 
• Talk to national authorities to represent patients. 

Toolkit Suggestions: 

• Create brochures (and translate them if needed). 
• Collect patient stories about data sharing. 
• Run surveys to understand patient experiences. 

Key Dates 

Year	What’s Happening
2025	EHDS becomes law
2027	Basic data (e.g. prescriptions) shared across EU
2029	Includes lab results, scans, discharge letters
2031	More data types added
2033	First EU Commission review
2035	Fully working system across the EU

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Why Is EHDS Important? 

For Patients: 

• No more repeated tests. 
• Always have your medical history. 
• Better care, even abroad. 
• More control over your data. 

For Doctors: 

• Faster access to key information. 
• Less paperwork. 
• More time with patients. 

For Researchers & Policymakers: 

• Better data. 
• Faster innovation. 
• Smarter health policies. 

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Final Thoughts 

The EHDS is a big step forward, but there are challenges: 

• Not all countries are equally digital. 

• People need clear information about their rights. 

• Patients must be involved in shaping the system. 

The toolkit encourages patient organisations to stay engaged and help build a system that is safe, fair, and easy to understand. 

Why It Matters for the FH Europe Foundation Community 

For the FH Europe Foundation Community – which includes people living with familial hypercholesterolaemia (FH) and other inherited lipid conditions – the EHDS offers a vital opportunity. It can improve early diagnosis, enable better-coordinated care across borders, and support research into rare and underdiagnosed conditions. By contributing to and benefiting from high-quality, secure data sharing, the community can help shape a future where personalised, timely, and effective care is available to all, no matter where they live in the EU. 

🔗 Want to learn more? Visit the Data Saves Lives website.  

📺 Watch this clip – What is Data Saves Lives

Special thanks to our ambassador, Renate Kaal-Poppelars, for sharing her insights and contributing to this piece.

Are you ready to make a difference and showcase your creative talents? We, the HoFH community under the umbrella of FH Europe Foundation, call on all artists, designers, and creative enthusiasts from all walks of life to participate in our exciting logo competition for HoFH Awareness Day! 

Whether you’re a professional designer or simply someone who enjoys using art to tell meaningful stories, this is your opportunity to contribute to a powerful cause. Your design could help raise global awareness about a rare and life-threatening condition—and bring hope to those affected.

What is HoFH? HoFH is a rare genetic condition that affects individuals from all backgrounds and walks of life. It's characterised by dangerously high levels of LDL cholesterol, leading to an increased risk of premature cardiovascular disease. Despite its rarity, HoFH can profoundly impact individuals and families, making awareness and support crucial. HoFH is a genetic condition, when a child inherits a copy of the same FH-causing gene from both parents. Although it is very severe and rare, it can be treated effectively. Yet, awareness, diagnosis and equitable access to medication is a serious issue, leaving many at a risk of heart attacks and even death very early in childhood. 

Why a Logo Competition? Why engage the Public? We believe that raising awareness starts with a powerful symbol that resonates with people from all walks of life. That's why we're inviting YOU to design and inspire the official logo for HoFH Awareness Day! Your design will serve as a beacon of hope, unity, and support for those affected by HoFH, while also raising awareness in the wider community and helping prevent the preventable. 

Galaxy Forces United: For HoFH Awareness Day! 

How to Participate:

• Design Criteria: Your logo should capture the spirit of unity, resilience, and hope in the face of HoFH. Whether you're inspired by art, nature, or your own experiences, let your creativity shine! There are no limits to what you can create – the sky's the limit!
• Submission Guidelines: Submit your logo design in JPEG or PNG format via the form online by September 24th, 2025 (FH Awareness Day). Don't forget to include your name, age (if under 18), and a brief description of the story behind the visual.
• Spread the Word: Share this opportunity with your community—friends, family, schools, workplaces, and creative groups. The more voices we include, the stronger our message becomes. 
• Judging Process: A panel of international judges will review all submissions and select the winning design based on creativity, originality, and relevance to the theme.
• Recognition: The winner of the logo competition will be announced on November 15th, 2025 at the FH Europe Foundation Annual Network Meeting, along with recognition on FH Europe Foundation's website, social media channels, and promotional materials.
• Epic Prize Package: A custom galaxy prize bag with your winning logo

Your design will inspire the official logo for HoFH Awareness Day, leaving a lasting impact on the global community. 

For inspiration, hear the stories from some our ambassadors on our HoFH webpage

Important dates:

Meet the Jury:

Chyrel Lichaa (Read bio)

HoFH Patient Ambassador

Lebanon

 

 

Prof. Albert Wiegman (Read bio)

Paediatrician

The Netherlands

 

 

Prof. Marina Cuchel (Read bio)

Researcher

USA

 

 

Mateusz Szwachta (Read bio)

EAS Communication & Community Manager

Sweden

 

 

Maja Bartoszewicz Moritz  (Read bio)

FHEF Rare Disease Project Manager

Poland

 

 

Marc Salloum (Read bio)

HoFH Patient Ambassador

Lebanon

 

 

Don't miss your chance to be part of something meaningful and make a difference in the fight against a rare and severe cardiovascular disease. Join us in raising awareness, promoting unity, and empowering individuals and families affected by HoFH. Together, we can create a brighter future for all. 

For more information and updates, visit www.fhef.org, follow #Unite4HoFH or contact us at chyrel@fheurope.org or maja@fheurope.org.

Get creative, get involved, and let's unite for HoFH awareness!

 Why we want to include the public?

1. Community Engagement: By involving the public in the logo design process, we can engage a wider audience, including individuals affected by both forms of Homozygous Familial Hypercholesterolaemia, their families, healthcare professionals, and the general public. This engagement fosters a sense of community and ownership among stakeholders.
2. Awareness and Visibility: A logo competition generates buzz and increases visibility for our community and our mission to raise awareness about HoFH. We trust it will attract media attention, spark conversations on social media platforms, and draw people's interest to learn more about the condition.
3. Creativity and Innovation: Opening the competition to the public allows for a diverse range of creative ideas and perspectives. This can lead to innovative and impactful logo designs that effectively communicate the message of HoFH awareness and advocacy. 
4. Inclusivity: We know public competitions promote inclusivity by giving everyone an equal opportunity to participate, regardless of their background or expertise. Through this inclusive approach we allow for diverse voices to be heard and represented in the design process.
5. Crowdsourcing Talent: By tapping into the creativity and talent of the galaxy, we can access a wide pool of professional designers and artists as well as enthusiasts – young and senior - who may offer fresh and unique perspectives. This crowdsourcing approach will surely result in logo designs that resonate with a broad audience.
6. Building a Sense of Ownership: When individuals contribute to the creation of a logo through a public competition, they develop a sense of ownership and pride in the organization and its mission. This is why we trust it will lead to increased support and engagement from participants and their networks from around the world!

Entry Form