Patvocates

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.

20/11/2025

Earlier this month, ISPOR Europe 2025 in Glasgow opened with a plenary session asking a critical question: is patient engagement in healthcare investments still a promise or has it become a practice? The session was moderated by Joep Muijrers and brought together voices from across the healthcare ecosystem including Luc Truyen, Carole Longson, David Haerry and Steffen Thirstrup.

David Haerry drew on his long experience as a patient advocate and collaborator with regulators and industry. Sharing his personal journey he noted that while some organisations have embraced engagement others lag behind. “𝘛𝘩𝘰𝘴𝘦 𝘸𝘩𝘰 𝘨𝘰 𝘰𝘯 𝘵𝘩𝘦 𝘫𝘰𝘶𝘳𝘯𝘦𝘺 𝘥𝘰𝘯’𝘵 𝘵𝘶𝘳𝘯 𝘣𝘢𝘤𝘬,” he said. He added that “𝘪𝘵 𝘪𝘴 𝘮𝘰𝘳𝘦 𝘸𝘰𝘳𝘬 𝘵𝘩𝘢𝘯 𝘺𝘰𝘶 𝘦𝘹𝘱𝘦𝘤𝘵 𝘣𝘶𝘵 𝘪𝘵’𝘴 𝘸𝘰𝘳𝘵𝘩 𝘪𝘵,” highlighting the need for more observational data post approval and greater use of real world evidence to understand how therapies perform in practice.

His call to action was clear: senior leadership must be convinced that patient engagement is not optional but a strategic priority embedded throughout organisations. You can read more about the plenary discussion in the full blog from 𝘛𝘩𝘦 𝘌𝘷𝘪𝘥𝘦𝘯𝘤𝘦 𝘉𝘢𝘴𝘦.

Link: https://becarispublishing.com/digital-content/blog-post/ispor-europe-2025-inside-first-plenary-rethinking-patient-engagement-healthcare

The Evidence Base Post 10 November 2025 ISPOR Europe 2025 – Inside the first plenary: Rethinking patient engagement in healthcare investments Laura Dormer The opening plenary of ISPOR Europe 2025, organized by ISPOR — The Professional Society for Health Economics and Outcomes Research, set the t...

17/11/2025

The first 𝗘𝘂𝗿𝗼𝗽𝗲𝗮𝗻 𝗥𝗲𝘀𝗽𝗶𝗿𝗮𝘁𝗼𝗿𝘆 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗔𝗰𝗮𝗱𝗲𝗺𝘆 (𝗘𝗥𝗣𝗔) took place last week in Prague, hosted for the first time by the European Federation of Allergy and Airways Diseases Patients' Associations (EFA) and co-created with the Steering Committee of patient organisations: Alpha-1 Europe Alliance asbl, CF Europe, European Pulmonary Fibrosis Federation, Pulmonary Hypertension Association Europe, TB Europe Coalition and Lung Cancer Europe.

Over four days, more than 40 patient advocates from across Europe came together to strengthen their leadership, advocacy and collaboration skills. The programme focused on how patient experience can guide research, influence policy, improve access to care and build alliances across diseases and borders.

Patvocates is honoured to have supported the planning and delivery of the inaugural Academy, working closely with EFA and the Steering Committee to shape the programme and facilitate sessions. Special thanks to our team members Alfonso Aguarón, Jan Geissler, Rebeca Castineira, Lis Puga and Anastasia Mityagina for their dedication and contributions. It was a new opportunity to help create a space where patient leaders could connect, learn and grow.

To everyone who participated: thank you for your energy, insight and commitment. We look forward to seeing how you continue to lead change in respiratory health.



📸 Photo credits: Héctor Herrería

07/11/2025

𝗧𝗵𝗲 𝗣𝗿𝗶𝗻𝗰𝗶𝗽𝗹𝗲𝘀 𝗼𝗳 𝗖𝗮𝗿𝗲 𝗳𝗼𝗿 𝗖𝗜𝗗𝗣 𝗽𝗿𝗼𝗷𝗲𝗰𝘁 𝗰𝗼𝗻𝘁𝗶𝗻𝘂𝗲𝘀 𝘁𝗼 𝗴𝗮𝘁𝗵𝗲𝗿 𝘃𝗮𝗹𝘂𝗮𝗯𝗹𝗲 𝗶𝗻𝘀𝗶𝗴𝗵𝘁𝘀 — 𝘁𝗵𝗶𝘀 𝘁𝗶𝗺𝗲 𝗶𝗻 𝗕𝗮𝗿𝗰𝗲𝗹𝗼𝗻𝗮.

As part of this international initiative by GBS-CIDP Foundation International and Epodin, and supported by Patvocates, healthcare professionals from across Europe came together for an in-person workshop focused on care standards for 𝗖𝗵𝗿𝗼𝗻𝗶𝗰 𝗜𝗻𝗳𝗹𝗮𝗺𝗺𝗮𝘁𝗼𝗿𝘆 𝗗𝗲𝗺𝘆𝗲𝗹𝗶𝗻𝗮𝘁𝗶𝗻𝗴 𝗣𝗼𝗹𝘆𝗻𝗲𝘂𝗿𝗼𝗽𝗮𝘁𝗵𝘆 (𝗖𝗜𝗗𝗣).

Following the earlier Patient Advocates Workshop in Berlin, this second meeting brought together 16 experts from 10 countries across Europe — including neurologists, nurses, psychologists, physiotherapists, social workers and researchers — to share experiences and discuss how to make CIDP care more consistent, coordinated and person-centred. Their contributions will help shape a care pathway that reflects the real-world needs of those affected.

The 𝗣𝗿𝗶𝗻𝗰𝗶𝗽𝗹𝗲𝘀 𝗼𝗳 𝗖𝗮𝗿𝗲 will set out what people with CIDP should be able to expect from health and social care across Europe. They aim to support advocacy efforts, inform health policy conversations and strengthen the role of patient voices in shaping care.

Warm thanks to all who made the Barcelona workshop a success — especially Richard Sperry, Jean-Philippe Plançon, Luis Querol, Lisa Butler, Elena Sperry Fernandez, Lis Puga, Nirohshah Trialonis-Suthakharan, Burhan Omar and the dedicated healthcare professionals who took part.

🗣️ 𝗡𝗲𝘅𝘁 𝘂𝗽: 𝗼𝗻𝗹𝗶𝗻𝗲 𝗶𝗻𝘁𝗲𝗿𝘃𝗶𝗲𝘄𝘀: with patients, healthcare professionals and other experts. If you are interested in contributing and meet the criteria, please contact poc@gbs-cidp.org.

31/10/2025

The Patvocates team took part in 𝗠𝗲𝗿𝗰𝗸 𝗛𝗲𝗮𝗹𝘁𝗵𝗰𝗮𝗿𝗲'𝘀 annual 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝟯𝟲𝟬 𝗦𝘂𝗺𝗺𝗶𝘁 this year in Boston.

Highlights included the session led by Jan Geissler, “𝘚𝘩𝘢𝘬𝘪𝘯𝘨 𝘰𝘳 𝘚𝘩𝘢𝘱𝘪𝘯𝘨 𝘗𝘢𝘵𝘪𝘦𝘯𝘵 𝘌𝘯𝘨𝘢𝘨𝘦𝘮𝘦𝘯𝘵?” - a real-time discussion exploring the key influencers shaping patient and carer involvement. The session centred on insights from 14 patient and carer advisors across oncology, rare disease, neurology, immunology and fertility, highlighting ongoing challenges across the EU, USA and China, such as unstable funding, reduced federal grants and the critical need for partnerships between industry and community to sustain advocacy and education initiatives. Policy discussions addressed access barriers, reimbursement challenges and the importance of robust data readiness to support HTA submissions, alongside the impact of reduced telehealth coverage on patient access and continuity of care.

Mariel Thottam shared progress on supporting the company with a framework for earlier and more systematic patient engagement, emphasising established feedback loops, integration of carer perspectives, digital and data support and embedding health equity. Participants then broke into indication-specific groups to identify common barriers, challenges and potential solutions to make engagement more feasible, respectful and impactful across R&D phases. Groups also voted on potential KPIs to track and assess meaningful outcomes related to patient and carer engagement at the company and advised on communication plans.

The session concluded with Jan participating in the closing Q&A panel, sharing insights on the impact of AI on the future of patient and carer engagement and exploring digital tools to support streamlined, effective engagement processes in medicine development. The discussion offered thoughtful perspectives on how collaborative, data-informed and patient-centred approaches can help move healthcare forward in a meaningful way.

Special thanks to the Merck Healthcare team, including Tone Brauti Fritzen and Mihaela Militaru, and congratulations to everyone involved in making this year's summit a success.

23/10/2025

The 𝗚𝗹𝗼𝗯𝗮𝗹 𝗠𝗲𝗻𝘁𝗮𝗹 𝗛𝗲𝗮𝗹𝘁𝗵 𝗖𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆 𝗦𝘂𝗺𝗺𝗶𝘁 𝟮𝟬𝟮𝟱 , hosted by Boehringer Ingelheim, has once again brought together an extraordinary group of patient advocates, carers and community leaders from across the world.

Held in Wiesbaden, Germany from 21–23 October, this year’s summit united more than 60 participants representing mental health communities from Europe, Africa, Asia, Australia and the Americas, each contributing unique perspectives, experiences and insights to shape what collaboration in mental healthcare can look like.

We had the opportunity to support Boehringer Ingelheim in project management, content development and engagement design for this flagship event. Our work focused on ensuring meaningful exchange, fostering skill development and strengthening the collective voice of the global mental health community as equal partners in shaping future systems of care.

Our sincere congratulations go to Boehringer Ingelheim, particularly Vanessa Pott and the wider mental health team, as well as summit co-host Roi Shternin, for curating such a thoughtful and inclusive platform for knowledge sharing and co-creation. The energy and commitment of all participants demonstrate that progress in mental health begins with community, collaboration and shared purpose.

A heartfelt thank you to our colleagues Jan Geissler, Mariel Thottam, Alfonso Aguarón, Sabine Hahn and Nirohshah Trialonis-Suthakharan for their on-site contributions, and to Anastasia Naoum and Danika Sharek for their vital support to the team.

At Patvocates, we believe that every conversation that brings together diverse voices moves the field closer to systems that listen, include and evolve.



Photo Credits: Boehringer Ingelheim & Patvocates

23/10/2025

𝗡𝗲𝘄 𝗪𝗵𝗶𝘁𝗲 𝗣𝗮𝗽𝗲𝗿: “𝗔𝘁 𝘁𝗵𝗲 𝗰𝗿𝗼𝘀𝘀𝗿𝗼𝗮𝗱𝘀 𝗼𝗳 𝘁𝘂𝗺𝗼𝘂𝗿-𝗮𝗴𝗻𝗼𝘀𝘁𝗶𝗰 𝗶𝗻𝗻𝗼𝘃𝗮𝘁𝗶𝗼𝗻 – 𝗛𝗼𝘄 𝗰𝗮𝗻 𝗘𝘂𝗿𝗼𝗽𝗲 𝗸𝗲𝗲𝗽 𝘂𝗽 𝘄𝗶𝘁𝗵 𝗮𝗱𝘃𝗮𝗻𝗰𝗲𝘀 𝗶𝗻 𝗰𝗮𝗻𝗰𝗲𝗿 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁?”

𝗧𝘂𝗺𝗼𝘂𝗿-𝗮𝗴𝗻𝗼𝘀𝘁𝗶𝗰 𝘁𝗵𝗲𝗿𝗮𝗽𝗶𝗲𝘀 represent a new frontier in precision oncology, targeting the molecular profile of cancer rather than its site of origin. Their promise is significant, but Europe’s current evidence, access and clinical frameworks are not yet fully equipped to accommodate this innovation.

A new white paper developed by Syneos Health Communications brings together perspectives from across Europe, including clinicians, HTA specialists and patient advocates, to explore how to accelerate the regulatory approval, access and clinical adoption of these therapies.

Among the contributors is Jan Geissler, CEO of Patvocates, who participated as part of the expert working group and co-authored the foreword alongside Antonella Cardone and Warnyta Minnaard.

We welcome the publication’s call for stronger collaboration, adaptability and patient involvement to ensure that innovation in treatments translates into timely and access for people affected by cancer across Europe.

𝗥𝗲𝗮𝗱 𝘁𝗵𝗲 𝘄𝗵𝗶𝘁𝗲 𝗽𝗮𝗽𝗲𝗿 𝗵𝗲𝗿𝗲:
🔗https://tumouragnosticeurope.com/At_the_crossroads_of_tumour-agnostic_innovation_in_Europe_White_paper.pdf

15/10/2025

While Patvocates work across Europe, it is always a special pleasure to contribute to important initiatives in Germany, and particularly in the region of Munich where the company is based.

This year, our CEO Jan Geissler served as a jury member at the 𝐌𝐒𝐃 𝗗𝗲𝘂𝘁𝘀𝗰𝗵𝗹𝗮𝗻𝗱 𝗛𝗲𝗮𝗹𝘁𝗵 𝗔𝘄𝗮𝗿𝗱 (𝗠𝗦𝗗 𝗚𝗲𝘀𝘂𝗻𝗱𝗵𝗲𝗶𝘁𝘀𝗽𝗿𝗲𝗶𝘀) and 𝗠𝗦𝗗 𝗛𝗲𝗮𝗹𝘁𝗵 𝗙𝗼𝗿𝘂𝗺 𝟮𝟬𝟮𝟱 (𝗠𝗦𝗗 𝗚𝗲𝘀𝘂𝗻𝗱𝗵𝗲𝗶𝘁𝘀𝗳𝗼𝗿𝘂𝗺). Yesterday, he had the honour of holding a 𝘭𝘢𝘶𝘥𝘢𝘵𝘪𝘰 for the Special Award in the category of Prevention, awarded to the “𝘝𝘢𝘤𝘤𝘪𝘯𝘢𝘵𝘪𝘰𝘯 𝘙𝘦𝘤𝘰𝘳𝘥 𝘊𝘩𝘦𝘤𝘬” (𝘐𝘮𝘱𝘧𝘱𝘢𝘴𝘴𝘤𝘩𝘦𝘤𝘬) project by the City of Mülheim an der Ruhr. The project was one of 7 projects receiving this year's awards.

In his speech, Jan emphasised: “𝘗𝘳𝘦𝘷𝘦𝘯𝘵𝘪𝘰𝘯 𝘪𝘴 𝘰𝘯𝘦 𝘰𝘧 𝘵𝘩𝘦 𝘮𝘰𝘴𝘵 𝘦𝘧𝘧𝘦𝘤𝘵𝘪𝘷𝘦 𝘧𝘰𝘳𝘮𝘴 𝘰𝘧 𝘩𝘦𝘢𝘭𝘵𝘩 𝘱𝘳𝘰𝘮𝘰𝘵𝘪𝘰𝘯 𝘢𝘯𝘥 𝘺𝘦𝘵 𝘪𝘵 𝘪𝘴 𝘰𝘧𝘵𝘦𝘯 𝘶𝘯𝘥𝘦𝘳𝘦𝘴𝘵𝘪𝘮𝘢𝘵𝘦𝘥. 𝘝𝘢𝘤𝘤𝘪𝘯𝘢𝘵𝘪𝘰𝘯𝘴 𝘱𝘭𝘢𝘺 𝘢 𝘤𝘦𝘯𝘵𝘳𝘢𝘭 𝘳𝘰𝘭𝘦 𝘪𝘯 𝘵𝘩𝘪𝘴. 𝘞𝘩𝘦𝘯 𝘪𝘵 𝘤𝘰𝘮𝘦𝘴 𝘵𝘰 𝘱𝘳𝘰𝘵𝘦𝘤𝘵𝘪𝘰𝘯 𝘢𝘨𝘢𝘪𝘯𝘴𝘵 𝘵𝘩𝘦 𝘩𝘶𝘮𝘢𝘯 𝘱𝘢𝘱𝘪𝘭𝘭𝘰𝘮𝘢𝘷𝘪𝘳𝘶𝘴 (𝘏𝘗𝘝), 𝘸𝘩𝘪𝘤𝘩 𝘤𝘢𝘯 𝘤𝘢𝘶𝘴𝘦 𝘤𝘢𝘯𝘤𝘦𝘳, 𝘸𝘦 𝘢𝘳𝘦 𝘴𝘵𝘪𝘭𝘭 𝘧𝘢𝘳 𝘧𝘳𝘰𝘮 𝘢𝘤𝘩𝘪𝘦𝘷𝘪𝘯𝘨 𝘵𝘩𝘦 𝘨𝘰𝘢𝘭𝘴 𝘰𝘧 𝘵𝘩𝘦 𝘌𝘜 𝘊𝘢𝘯𝘤𝘦𝘳 𝘗𝘭𝘢𝘯. 𝘛𝘩𝘦 𝘱𝘳𝘰𝘫𝘦𝘤𝘵 𝘸𝘦 𝘢𝘳𝘦 𝘩𝘰𝘯𝘰𝘶𝘳𝘪𝘯𝘨 𝘵𝘰𝘥𝘢𝘺 𝘢𝘥𝘥𝘳𝘦𝘴𝘴𝘦𝘴 𝘦𝘹𝘢𝘤𝘵𝘭𝘺 𝘵𝘩𝘪𝘴 𝘤𝘩𝘢𝘭𝘭𝘦𝘯𝘨𝘦 𝘢𝘯𝘥 𝘥𝘦𝘮𝘰𝘯𝘴𝘵𝘳𝘢𝘵𝘦𝘴 𝘩𝘰𝘸 𝘵𝘩𝘦 𝘱𝘶𝘣𝘭𝘪𝘤 𝘩𝘦𝘢𝘭𝘵𝘩 𝘴𝘦𝘳𝘷𝘪𝘤𝘦, 𝘦𝘷𝘦𝘯 𝘸𝘪𝘵𝘩𝘰𝘶𝘵 𝘦𝘹𝘵𝘦𝘳𝘯𝘢𝘭 𝘧𝘶𝘯𝘥𝘪𝘯𝘨, 𝘤𝘢𝘯 𝘤𝘭𝘰𝘴𝘦 𝘤𝘢𝘳𝘦 𝘨𝘢𝘱𝘴 𝘢𝘯𝘥 𝘳𝘦𝘢𝘤𝘩 𝘧𝘢𝘮𝘪𝘭𝘪𝘦𝘴 𝘸𝘩𝘰 𝘩𝘢𝘷𝘦 𝘯𝘰𝘵 𝘱𝘳𝘦𝘷𝘪𝘰𝘶𝘴𝘭𝘺 𝘵𝘢𝘬𝘦𝘯 𝘢𝘥𝘷𝘢𝘯𝘵𝘢𝘨𝘦 𝘰𝘧 𝘱𝘳𝘦𝘷𝘦𝘯𝘵𝘪𝘷𝘦 𝘴𝘦𝘳𝘷𝘪𝘤𝘦𝘴. 𝘞𝘪𝘵𝘩 𝘨𝘳𝘦𝘢𝘵 𝘥𝘦𝘥𝘪𝘤𝘢𝘵𝘪𝘰𝘯 𝘢𝘯𝘥 𝘪𝘯𝘯𝘰𝘷𝘢𝘵𝘪𝘷𝘦 𝘵𝘩𝘪𝘯𝘬𝘪𝘯𝘨, 𝘵𝘩𝘪𝘴 𝘱𝘳𝘰𝘫𝘦𝘤𝘵 𝘩𝘦𝘭𝘱𝘴 𝘦𝘯𝘴𝘶𝘳𝘦 𝘵𝘩𝘢𝘵 𝘮𝘰𝘳𝘦 𝘤𝘩𝘪𝘭𝘥𝘳𝘦𝘯 𝘢𝘯𝘥 𝘢𝘥𝘰𝘭𝘦𝘴𝘤𝘦𝘯𝘵𝘴 𝘳𝘦𝘤𝘦𝘪𝘷𝘦 𝘧𝘶𝘭𝘭 𝘷𝘢𝘤𝘤𝘪𝘯𝘢𝘵𝘪𝘰𝘯 𝘱𝘳𝘰𝘵𝘦𝘤𝘵𝘪𝘰𝘯 – 𝘱𝘳𝘦𝘷𝘦𝘯𝘵𝘪𝘯𝘨 𝘥𝘪𝘴𝘦𝘢𝘴𝘦𝘴 𝘧𝘳𝘰𝘮 𝘥𝘦𝘷𝘦𝘭𝘰𝘱𝘪𝘯𝘨 𝘪𝘯 𝘵𝘩𝘦 𝘧𝘪𝘳𝘴𝘵 𝘱𝘭𝘢𝘤𝘦.”

The annual MSD Gesundheitsforum, held for the 15th time, is a respected platform for dialogue and innovation in healthcare, bringing together leading voices from science, policy and industry. This year’s edition once again reaffirmed its importance through thought-provoking discussions, fresh ideas and the participation of the Bavarian State Minister for Health, Care and Prevention, Judith Gerlach, MdL, highlighting the forum’s key role at the intersection of healthcare and politics.

Today, the discussions continued with panel sessions and workshops where Jan was also on stage as a panellist in a session on "𝘙𝘦𝘴𝘵𝘢𝘳𝘵𝘪𝘯𝘨 𝘏𝘦𝘢𝘭𝘵𝘩 – 𝘛𝘰𝘸𝘢𝘳𝘥𝘴 𝘉𝘦𝘵𝘵𝘦𝘳 𝘊𝘢𝘳𝘦 𝘵𝘩𝘳𝘰𝘶𝘨𝘩 𝘗𝘳𝘦𝘷𝘦𝘯𝘵𝘪𝘰𝘯, 𝘐𝘯𝘯𝘰𝘷𝘢𝘵𝘪𝘰𝘯 𝘢𝘯𝘥 𝘌𝘧𝘧𝘪𝘤𝘪𝘦𝘯𝘤𝘺", and as a speaker about the patient perspective on data use, data protection and data governance.
A warm thank you to MSD Deutschland and all participants for their inspiring contributions, especially to Kevin Peters, Martin Goehl, Leonie Ruhwinkel, Martin Dietrich, Christof von Kalle, Ursula Marschall, Johannes Bruns, Klaus Holetschek, Ralf Langejürgen, Jutta Wendel-Schrief, and to Munich for providing the ideal setting for such a forward-looking event. 🤝

09/10/2025

𝗧𝗼𝗱𝗮𝘆 𝗺𝗮𝗿𝗸𝘀 𝗮𝗻 𝗶𝗺𝗽𝗼𝗿𝘁𝗮𝗻𝘁 𝘀𝘁𝗲𝗽 𝗶𝗻 𝘁𝗵𝗲 𝗣𝗿𝗶𝗻𝗰𝗶𝗽𝗹𝗲𝘀 𝗼𝗳 𝗖𝗮𝗿𝗲 𝗳𝗼𝗿 𝗖𝗜𝗗𝗣 𝗽𝗿𝗼𝗷𝗲𝗰𝘁 – an international initiative by GBS-CIDP Foundation International and Epodin ., supported by Patvocates. The aim: to improve care standards, empower patients, and support advocacy for people living with 𝗖𝗵𝗿𝗼𝗻𝗶𝗰 𝗜𝗻𝗳𝗹𝗮𝗺𝗺𝗮𝘁𝗼𝗿𝘆 𝗗𝗲𝗺𝘆𝗲𝗹𝗶𝗻𝗮𝘁𝗶𝗻𝗴 𝗣𝗼𝗹𝘆𝗻𝗲𝘂𝗿𝗼𝗽𝗮𝘁𝗵𝘆 (𝗖𝗜𝗗𝗣).

This journey begins in Berlin, where Patvocates facilitated the project’s first in-person Patient Advocates . Sixteen from across Europe took part, sharing their experiences and exploring common challenges to help shape a patient-centred care for . Their lived experience is central to identifying what needs to change in diagnosis, treatment and ongoing care.

𝗧𝗵𝗲 𝗣𝗿𝗶𝗻𝗰𝗶𝗽𝗹𝗲𝘀 𝗼𝗳 𝗖𝗮𝗿𝗲 (𝗣𝗼𝗖) will set out what patients should be able to expect from health and social care across Europe. They will serve as a basis for advocacy, guide healthcare discussions, and support patient voices in addressing the different realities faced by people with CIDP.

A huge thank you to everyone who helped make today a success, including Richard Sperry, Jean-Philippe Plançon, Maureen Neville, Nancy Di Salvo, Lisa Butler, Lis Puga, Nirohshah Trialonis-Suthakharan, Alfonso Aguarón and the amazing patient advocates!

This workshop marks the first of several key gatherings that will bring together different perspectives to move the project forward. The next meeting, involving healthcare professionals, will take place in Barcelona next month.

09/10/2025

🌍 Did you know that 𝟭.𝟴 𝗯𝗶𝗹𝗹𝗶𝗼𝗻 𝗽𝗲𝗼𝗽𝗹𝗲 𝘄𝗼𝗿𝗹𝗱𝘄𝗶𝗱𝗲 𝗹𝗶𝘃𝗲 𝘄𝗶𝘁𝗵 𝘀𝗸𝗶𝗻 𝗱𝗶𝘀𝗲𝗮𝘀𝗲𝘀, yet these conditions have long been under-prioritised, leading to long waits for care and unnecessary suffering?

That’s why 𝗽𝗮𝘁𝗶𝗲𝗻𝘁 𝗲𝗻𝗴𝗮𝗴𝗲𝗺𝗲𝗻𝘁 𝗮𝗻𝗱 𝗮𝗱𝘃𝗼𝗰𝗮𝗰𝘆 are vital. Last month, we were proud to support International Alliance of Dermatology Patient Organizations - GlobalSkin in shaping and facilitating sessions at the GlobalSkin-Europe Health Policy Influencers Forum in Paris, ahead of . 🇫🇷

The event brought together 30 patient advocates from across Europe to exchange experiences and develop strategies to influence policy; particularly around implementing the recent 𝗪𝗛𝗔 𝗥𝗲𝘀𝗼𝗹𝘂𝘁𝗶𝗼𝗻 𝗼𝗻 𝗦𝗸𝗶𝗻 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 and harnessing future insights garnered from the Global Research on the Impact of Dermatological Diseases (GRIDD) Study.

Patvocates’ Alfonso Aguarón, Director of Patient Engagement, opened the session with an overview of why advocacy matters in dermatology. This was followed by examples of real-world advocacy success from GlobalSkin members, and a hands-on workshop where participants began mapping out impactful advocacy campaigns to effectively engage with policy makers.

💡We were truly inspired by the 𝗲𝗻𝗲𝗿𝗴𝘆, 𝗶𝗻𝘀𝗶𝗴𝗵𝘁𝘀, 𝗮𝗻𝗱 𝗰𝗼𝗺𝗺𝗶𝘁𝗺𝗲𝗻𝘁 of the patient advocates present. Their determination drives change.

Thank you to International Alliance of Dermatology Patient Organizations - GlobalSkin and to all the advocates who continue to champion better outcomes for people living with skin diseases!



Photos: GlobalSkin and Patvocates

08/10/2025

A week on from the 𝗘𝗥𝗦 𝗖𝗼𝗻𝗴𝗿𝗲𝘀𝘀 in Amsterdam (27 September-1 October), our colleagues Rachel Giles and Marieke Heisen are looking back on an inspiring five days of exchange and the lessons we learned from the respiratory community.

To the community’s disappointment, consensus on a UN Political Declaration on Noncommunicable Diseases could not be reached, nevertheless many patient organisations remain focused on implementing the WHO resolution on lung health. We were reminded that the framework doesn’t necessarily direct holding governments accountable for lung health, and that patient organisations are more important than ever in evidence-based advocacy.

Thanks to the joint efforts of the European Respiratory Society (ERS) and the European Lung Foundation (ELF), the Congress created an open dialogue for organisations of all sizes and stages of development. With many new treatments on the horizon for conditions such as alpha-1 antitrypsin deficiency and COPD, it is more important than ever for to be equipped to gather and contribute to value discussions early on.

Our thanks to everyone who spoke with Rachel and Marieke, shared insights, or joined them in discussions throughout the Congress, including participants from the International Respiratory Coalition, European Federation of Allergy and Airways Diseases Patients' Associations (EFA), Global Allergy & Airways Patient Platform, Pulmonary Hypertension Association Europe, Stichting PIBO, the non-tuberculous mycobacteria (NTM) community, TB Europe Coalition, Alpha-1 Europe Alliance asbl, and many others. Reach out to continue the conversation!