Patvocates

10/04/2026

Ever heard of synthetic data? Here’s why it matters to you - in just three key points:

1. It protects your privacy
Synthetic data is generated by advanced algorithms trained on real patient information, but it doesn’t identify any individual. Think of it as a safe, virtual version of real health data.

2. It helps improve healthcare
Researchers and developers can use synthetic data to build better AI, test new tools, and accelerate innovation - without putting sensitive personal data at risk.

3. It still depends on real human data
Synthetic data is powerful, but it’s only as good as the real data behind it. It can’t fully replace real patient experiences - so both are essential for meaningful progress.

In short: safer data, faster innovation, better outcomes - with privacy at the core.

Within the SYNTHIA project, a large European collaboration to make synthetic data safer and more reliable in healthcare, a survey has been co-designed with the patient community to better understand perspectives and acceptance across Europe on the use of synthetic data in medicine, with Patvocates actively contributing to its development.

And now we are excited to announce the launch of the survey: “Your Voice Matters: European Survey on Synthetic Data in Healthcare”

This survey helps us understand people’s expectations and concerns so that future guidelines acknowledge the realities of those who live with health conditions every day. We want to highlight how extremely valuable your input is!

Please join the survey, it will take 12-15 minutes of your time, and your voice will help shape the future of healthcare!

Survey is available in English, Spanish, German, Dutch, and French.

20/03/2026

Patient organisations don’t need to become better clients of agencies.
They need to become strong, independent organisations in their own right.
That belief guided the work of our NGO Team, together with senior colleagues from Advocacy and Community Engagement, this week in Munich.

At Patvocates, our commitment to patient organisations is simple, but not always common: we work to make ourselves unnecessary.
We support organisations to grow stronger, build resilience, and develop the capabilities they need to stand fully on their own.

Because over the past 25 years, many of us have seen the full spectrum:
organisations that flourished, others that struggled, some that disappeared, and some that became powerful voices shaping healthcare, research, and patient evidence.
What makes the difference is rarely a single project or campaign.
It’s the fundamentals:
– strong governance
– sustainable funding
– effective structures
– clear strategy and priorities
– credible, high-quality evidence
– the ability to learn from the past
– and the confidence to be vocal and influential

This is why in our work with patient organisations and communities we always start with an exit strategy in mind. That‘s one of the uncommon values we actually bring to the table.
Not as an afterthought, but as a principle.
Because if we do our job well,
patient organisations won’t need us forever.
And that’s exactly the point.

13/03/2026

The DIA Europe Conference is a great place to see regulators, policymakers, industry key players, clinicians, and patient advocates come together.

If you’d like to discuss meaningful patient engagement and evidence generation in more depth, feel free to reach out - we’ll be there to observe, engage, network, and learn.

Drop us a line if you want to plan a meeting or catch up on-site.

10/03/2026

The 9th Systemic Sclerosis World Patient Congress organised by FESCA with the support of Patvocates took place in Athens alongside the medical congress last weekend.

Almost 200 participants, 40 speakers, 12 sessions, and 48 hours. Some aspects are easy to capture in numbers. But how do you quantify the networking, the valuable insights shared, the friendly smiles, the practical advice, the mutual support, the sense of unity, and the feeling of becoming better informed and better connected? These are things no statistics can truly measure.

What we can say with certainty, however, is that over the course of two days we witnessed real impact firsthand and walked away inspired, energised, and deeply grateful.

We warmly congratulate FESCA on the successful Congress. It has been a true pleasure and privilege for Patvocates to support you throughout this journey, both operationally and strategically.

The agenda, created for patients, by patients, supported participants in understanding the latest scientific advances, connecting with their community, and strengthening their role as partners in care. Our focus was clear: to make the experience practical, accessible, and empowering.

At Patvocates, we believe that when patient voices shape the conversation, care improves. This congress was another step toward stronger collaboration between patient and scientific communities.

04/03/2026

Yes, we know how to generate images with AI.

We appreciate powerful tools, smart methodologies, and innovative technologies. But even the most advanced systems cannot replace the energy of people sitting around the same table - challenging each other, brainstorming freely, and diving into deep, meaningful discussions.

This time at Patvocates, we brought together our Patient Evidence and Research Team - our internal “Evidence Coaches” - for a focused, in-person gathering dedicated to patient evidence as a powerful tool that is valued and yet underestimated by all stakeholders, while patient communities increasingly generate their own data, and while regulatory reflections of patient evidence are shifting.

For two intensive days, we put our heads together.

We asked difficult questions.
We shared insights, good and bad practice.
We debated and reimagined what robust patient-led evidence can truly achieve.

It’s not just a dataset, it’s not just smarter observation or a new business: patient-generated evidence generated with and by strong patient communities is the foundation to shape research design and healthcare decisions, with real impact on people’s lives, but based on data not anecdotes.

Two days.
Deep insights and experience.
A sharpened sense of purpose.
Strategy, implementation and patient impact in focus.

And this is only the beginning.
What comes next? Stay tuned.

28/02/2026

Today, on , we want to praise rare disease communities and their leaders.

Patients who become experts in their own condition because they have no choice.

Carers who coordinate care, do research on options, and hold families together.

Patient advocates who build grassroots organisations from scratch - while managing their own or their family’s health, often alongside a full-time job.

Rare disease communities are often small. Underfunded. Under-recognised. On limited capacity. Not “big enough” to automatically command attention or resources.

And yet - they show up:
They connect and guide rare disease patients and their families in the vacuum of other support
They work with clinicial experts which are as rare as the disease.
They educate policymakers who set their priorities often on common diseases.
They run non-profit organisations to drive peer support, policy work and research.

We’ve had the privilege of working with rare disease communities including rare cancers (leukemia, lymphoma, myeloma, neuroendocrine, a**l, etc.)​, sickle cell disease, thalassaemia, scleroderma, osteogenesis imperfecta, systemic mastocytosis, paroxysmal nocturnal hemoglobinuria (PNH), transthyretin amyloidosis (ATTR), chronic inflammatory demyelinating polyneuropathy (CIDP), hypophosphatasia (HPP), idiopathic multicentric Castleman disease (iMCD), just to name a few.

We believe that rare disease communities deserve more support, more recognition, and more structural backing than they currently receive.

At Patvocates, we are so proud to work alongside them — and are determined and committed to supporting their efforts with all our knowledge, our capacity, our experience in NGO management, research, evidence and policy work. We help to translate lived experience into evidence and action, so these communities can influence decisions across research, development and health systems.

On Rare Disease Day and throughout the year, we honor your rare, and exceptional, resilience, leadership and action.


European Patient Advocacy Institute

25/02/2026

Ahead of , the article “𝘗𝘢𝘵𝘪𝘦𝘯𝘵-𝘤𝘦𝘯𝘵𝘳𝘪𝘤𝘪𝘵𝘺 𝘪𝘯 𝘳𝘢𝘳𝘦 𝘥𝘪𝘴𝘦𝘢𝘴𝘦: 𝘢𝘤𝘤𝘦𝘭𝘦𝘳𝘢𝘵𝘪𝘯𝘨 𝘵𝘩𝘦 𝘱𝘢𝘵𝘩 𝘵𝘰 𝘵𝘳𝘦𝘢𝘵𝘮𝘦𝘯𝘵” highlights the systemic barriers that continue to delay access to diagnosis, expertise and treatment for millions of people worldwide. Written by Chris Moore, President, Europe at Veeva Systems, the article includes quotes from Jan Geissler, CEO of Patvocates, who reflects on his own experience of navigating a fragmented healthcare system following his rare cancer diagnosis. His experience reflects what many people living with rare diseases continue to face today, where patients and families must often take on the responsibility of connecting the dots between specialists, information and the care they need.

Improving this reality requires more than better coordination. It requires working directly with people living with rare diseases and as partners in shaping solutions. Patients bring essential knowledge about real-world care, unmet needs and what meaningful progress looks like. By listening to and working alongside patient communities, stakeholders across healthcare can help strengthen , support more equitable access and help ensure that advances in science translate into tangible improvements in patients’ lives.

Link to article:

CAR-Ts pose a unique challenge for healthcare systems, exacerbated by uncertainty around their long-term, real-world value

24/02/2026

Last week, Patvocates attended the 37th Deutscher Krebskongress (German Cancer Congress) in Berlin, one of the leading oncology congresses in Europe. The congress brought together clinicians, researchers, policymakers and patient advocates to exchange insights and help shape the future of cancer care.

Our Senior Research Manager, Nirohshah Trialonis-Suthakharan, spoke at the congress on Patient Experience Data (PED), exploring what it is, why it matters and what doors it can open for patients and advocates. Her presentation, Was genau sind Patient Experience Data (PED)? Grundlagen, Definition und Potenziale (“What exactly are Patient Experience Data (PED)? Foundations, definition and potential”), examined the foundations of PED and its role in strengthening advocacy, research and care.

PED captures what traditional clinical endpoints often miss: the lived reality of cancer, including quality of life, treatment burden and what truly matters to patients and carers. By translating lived experience into structured and actionable insights, PED provides a stronger foundation for advocacy, helping ensure that patient perspectives can inform clinical trial design, policy decisions and care delivery.

PED is a form of evidence-based advocacy. It transforms lived experience into structured, credible evidence that strengthens advocacy claims and enables more meaningful engagement with healthcare systems, regulators and policymakers.

At Patvocates, we value contributing to these conversations and advancing approaches that place patient experience at the centre of oncology research, policy and care.

15/02/2026

🎗 This , it is worth pausing to recognise a reality that is sometimes overlooked when we think about in childhood and youth: it affects more than health, intersecting with growth, learning, identity and the transition into adulthood.

For children and young people, the impact of cancer and its treatment is rarely confined to the clinical setting. It can shape education, social development, mental wellbeing and future opportunities, often long after treatment has ended. These long-term effects are not always visible in traditional measures of success, yet they strongly influence what living well means over time.

working in childhood and young adult cancer play a vital role in making these experiences visible. They help ensure that lived experience informs research priorities, survivorship planning and policy decisions, particularly where long-term impact matters as much as immediate outcomes.

At Patvocates, we want to empower patient organisations and young patient advocates to strengthen how experience is captured, translated into evidence and used to influence how cancer care is designed, evaluated and delivered.

We reaffirm the importance of ensuring that children, adolescents and young adults affected by cancer are heard, supported and meaningfully included in shaping care that reflects both their present needs and their futures.

04/02/2026

On , we should reflect on something that communities have long understood: patient experiences vary widely. Translating that reality into how treatments are tested, evaluated and delivered remains far more difficult.

Two people with the same diagnosis can live through very different consequences. The same treatment can preserve independence for one person while quietly eroding it for another. These differences are not incidental to care, they are part of what care actually means for patients.

Modern oncology may still rely heavily on population averages to judge success. Those averages are useful, but they cannot tell us who is able to keep working, who is able to think clearly, who is able to care for their family or who is simply able to get through the day without being overwhelmed by the burden of treatment.

Turning these lived differences into evidence that can shape decisions is where patient communities become indispensable. They are how experience moves from something that is heard to something that can influence research, clinical practice and regulatory choices.

At Patvocates, we work with , , companies and other partners to help ensure that what patients live with over time is reflected in how cancer care is designed and assessed.

22/01/2026

What happens when you bring together a team with deep, diverse expertise to challenge what patient engagement can, and should, look like in practice?

This week, members of the Patvocates team came together in Barcelona for a series of hands-on working sessions focused on strengthening patient engagement and exploring how it must continue to evolve across healthcare. The discussions were grounded in real-world experience, practical challenges and the growing expectation that we move beyond intent and into sustained, measurable impact.

With colleagues representing 8 nationalities in the room (and more supporting our initiatives), the conversations reflected the pan-European nature of Patvocates. Different health system realities, professional backgrounds and lived experiences informed how we approached engagement, not as a one-size-fits-all concept, but as something that must adapt to context while remaining credible and evidence-based.

As Patvocates grows, so does our ability to support organisations in embedding patient engagement more meaningfully, across research, policy and practice. Bringing a significant share of our collective expertise together created space to test assumptions, look ahead and think critically about how it needs to be strengthened, expanded and better integrated.

These discussions form part of our ongoing commitment to raising the bar, ensuring that patient insights genuinely shape decisions and lead to lasting impact.

More to come as this work continues to take shape. 👏 to our Patvocates Alfonso Aguarón, Ananda Plate, Blanca Poyo Ormaza, Chloé Peebles, Danika Sharek, Jan Geissler, Lucia Urbaneja Maniel, Maria Antonia Gonzalez Posada, Marié T. O'Shea, Mariel Thottam, Mercè Cases Escuté, Rachel Giles and Sabine Hahn.

18/12/2025

Earlier this month, brought the community together in Orlando, once again placing the field at the forefront of medical innovation. From new data on targeted treatments and cellular therapies to emerging real-world evidence and innovative trial designs, the science presented this year will help shape the future of care for people living with blood cancers and other haematological conditions.

When we look at all this progress, one key question remains for us at Patvocates: how do we ensure that innovation is truly meaningful for the people living with these conditions?

For us, this means keeping meaningful patient engagement at the heart of our work. It means working with patient organisations, clinicians, researchers, regulators and industry to ensure that outcomes, endpoints and access pathways reflect what really matters in the day-to-day lives of patients and their families.

Haematology has often served as an ice breaker for therapeutic advances. In such a fast-moving and promising landscape, we see patient engagement as a practical way to strengthen research and evidence, bringing community insights and patient needs into how studies are designed, which questions are prioritised, and which outcomes are measured, so that results are more relevant and usable in real-world care.

ASH 2025 was, for us, an important opportunity to listen, to learn, and to help ensure that the patient voice is meaningfully reflected in the conversations shaping tomorrow’s standards of care in haematology.