Patvocates

01/08/2025

Whether you're recharging by the sea or taking a well-earned break closer to home, we hope this season brings you space to reflect, recharge and remain inspired🏖

28/07/2025

Patvocates is proud to be supporting GBS-CIDP Foundation International and Epodin for the 𝗣𝗿𝗶𝗻𝗰𝗶𝗽𝗹𝗲𝘀 𝗼𝗳 𝗖𝗮𝗿𝗲 (𝗣𝗼𝗖) project — an initiative to improve care standards for people living with chronic inflammatory demyelinating polyneuropathy (CIDP).

This project in Europe will bring together patients, care partners, and healthcare professionals to co-create a patient-centered framework. It aims to inform advocacy, drive policy change, and support more consistent, high-quality care across healthcare systems.

🔗 https://www.gbs-cidp.org/2025/07/from-problem-to-promise-charting-a-better-path-for-cidp-patients-worldwide/

Principles of Care The Problem: A Patchwork of Care for a Complex Disease Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare and complex neurological disorder that affects patients in Europe and across the globe. However, despite medical advancements, far too many individuals with CI...

11/07/2025

"𝗪𝗵𝘆 𝗮𝗿𝗲 𝘄𝗲 𝗵𝗲𝗿𝗲?" is an important question we regularly ask ourselves, and one we are always eager to explore and share insights on.

We are here because patient engagement must be everyone’s responsibility, and turning knowledge into action is where change truly begins. This was the message shared by our CEO Jan Geissler at Johnson & Johnson’s internal MAFinity event earlier this week, where he was invited to present a session of the same name, “𝘞𝘩𝘺 𝘢𝘳𝘦 𝘸𝘦 𝘩𝘦𝘳𝘦?”, to around 100 participants from the company’s Medical Affairs teams across Europe.

At Patvocates, we fully share this perspective and believe the value of this kind of dialogue within industry cannot be overstated. We are pleased to contribute to this important process and to share it with the change makers in Johnson & Johnson’s European Medical Affairs team — including Wafae Iraqi and Maartje Mangelaars for establishing this session, as well as Patrick Laroche and Daniel De Schryver — who have gone beyond words to make deep patient community engagement happen in the company. Their work demonstrates how meaningful interactions with patient communities can help shape clinical practice, support shared decision-making, and better address the needs of underserved populations. They also highlighted the importance of reaching and training not only established opinion leaders but also hard-to-reach healthcare professionals — to ensure that high standards of care reach every patient.

The session may be over, but we continue to reflect on its impact. In many ways, the real work is only just beginning — and we are excited to see the changes and outcomes that will follow on this shared path forward.

03/07/2025

We are pleased to share that 𝗝𝗮𝗻 𝗚𝗲𝗶𝘀𝘀𝗹𝗲𝗿, CEO of Patvocates, has co-authored a newly published article in the Springer Nature journal "𝗧𝗵𝗲 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 – 𝗣𝗮𝘁𝗶𝗲𝗻𝘁-𝗖𝗲𝗻𝘁𝗲𝗿𝗲𝗱 𝗢𝘂𝘁𝗰𝗼𝗺𝗲𝘀 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵" together with fellow patient advocates, caregivers, and colleagues from the pharmaceutical and medical communications fields.
🔗 𝗥𝗲𝗮𝗱 𝘁𝗵𝗲 𝗮𝗿𝘁𝗶𝗰𝗹𝗲 𝗵𝗲𝗿𝗲: https://link.springer.com/article/10.1007/s40271-025-00750-w

The publication sets out seven recommended actions to promote more meaningful patient involvement in peer-reviewed publications. Drawing on research and personal and professional experience, the co-authors call for a shift in the publication landscape— one that shifts from merely including patients to actively partnering with them throughout the publication process.

Key topics include the role of patient authors in steering publication development, the importance of fair recognition and compensation and the need for broader accessibility of scientific outputs.

The article also proposes practical steps such as the use of a ‘patient author’ metatag to improve the traceability, visibility and standardisation of publications involving patient contributions.

Congratulations to Jan and the full author group led by Trishna Bharadia, including Rosie Robson, Lucie Laštíková, Laura D. Porter, Grace Richmond, Ben Johnson, Louise Roch & Dikran Toroser, for this timely and actionable contribution to the field.



🖼️Image from the article’s visual abstract

11/06/2025

The 𝗚𝗹𝗼𝗯𝗮𝗹 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗣𝗮𝗿𝘁𝗻𝗲𝗿𝘀𝗵𝗶𝗽 𝗦𝘂𝗺𝗺𝗶𝘁 𝟮𝟬𝟮𝟱 this week in Barcelona and Kuala Lumpur is more than a conference — it is a unique space where patient organisations from across regions meet not only to exchange experiences, but to 𝘤𝘰-𝘤𝘳𝘦𝘢𝘵𝘦 𝘤𝘰𝘯𝘤𝘳𝘦𝘵𝘦 𝘴𝘰𝘭𝘶𝘵𝘪𝘰𝘯𝘴.

From the 2021 edition through 2023 and now 2025, our Patvocates team has had the privilege of walking this journey with Boehringer Ingelheim. Together, we have not only listened — we have acted. Many of the ideas born in these Summits have since been transformed into practical tools 𝘸𝘪𝘵𝘩 and 𝘧𝘰𝘳 the community:
➕The 𝗣𝗘𝗗 𝗘𝘀𝘀𝗲𝗻𝘁𝗶𝗮𝗹𝘀 e-learning course
➕The 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗣𝗮𝘁𝗵𝘄𝗮𝘆𝘀 𝗠𝗮𝗽𝗽𝗶𝗻𝗴 𝗧𝗼𝗼𝗹

At 2025, our contributions reflected our continued commitment to strengthening patient engagement and advocacy:
✅ Jan Geissler @ GPPS Barcelona Hub co-presented the session “𝘗𝘢𝘵𝘪𝘦𝘯𝘵 𝘗𝘰𝘸𝘦𝘳𝘦𝘥 𝘗𝘳𝘰𝘨𝘳𝘦𝘴𝘴” with Vanessa Pott, joined the “𝘍𝘳𝘰𝘮 𝘞𝘩𝘺 𝘵𝘰 𝘏𝘰𝘸 𝘧𝘰𝘳 𝘗𝘌𝘋” panel, and moderated a Masterclass on Patient Experience Data (PED) featuring Claas Röhl and Gottfried Huss.
✅ Burhan Omar @ GPPS Kuala Lumpur Hub moderated a Masterclass on PED in Kuala Lumpur with Dr. Kalpana Bhaskaran, engaging patient organisations from across Asia.

As Jan shared during the opening plenary: there are many conferences where ideas are discussed, but little is done afterwards. At Patvocates, we are proud to say that we supported Boehringer Ingelheim to follow through and act on what they heard from the community. We make things happen in collaboration between the patient community and pharma — not only talking the talk but walking the walk — with partners like Boehringer Ingelheim who share that mindset.

We extend our heartfelt thanks to the Boehringer Ingelheim team whose dedication and collaboration made this Summit possible:
Vanessa Pott, Deepa Maas-Sundararaman, Carlota Smith, Kimberley Kallsen, Laura Sabata, Alexandra Ballester Alonso, Mark L., Eric Selzer, Eleanor Tan, Blanca Poyo, Danika Sharek and so many more who worked behind the scenes.

And above all, we congratulate and thank the incredible patient organisations who joined from across Europe and Asia, bringing their lived experience, ideas and diverse insights to . You are the reason this work matters.

The conversations will continue — but so will the work to make progress happen!



Photos: Boehringer Ingelheim & Patvocates

04/06/2025

🚨 𝗝𝗼𝗯 𝗼𝗽𝗲𝗻𝗶𝗻𝗴 𝗮𝘁 𝗣𝗮𝘁𝘃𝗼𝗰𝗮𝘁𝗲𝘀! We are looking for a highly organised and experienced 𝗘𝘅𝗲𝗰𝘂𝘁𝗶𝘃𝗲 𝗔𝘀𝘀𝗶𝘀𝘁𝗮𝗻𝘁 with strong communication skills and a proactive mindset to support our CEO. Play a key role in supporting leadership within a mission-focused organisation. This is a home-based role in Spain.

📩 To apply, please email your 𝗖𝗩 𝗮𝗻𝗱 𝗺𝗼𝘁𝗶𝘃𝗮𝘁𝗶𝗼𝗻 𝗹𝗲𝘁𝘁𝗲𝗿 to HR@patvocates.net with the subject line: “𝗔𝗽𝗽𝗹𝗶𝗰𝗮𝘁𝗶𝗼𝗻 𝗘𝘅𝗲𝗰𝘂𝘁𝗶𝘃𝗲 𝗔𝘀𝘀𝗶𝘀𝘁𝗮𝗻𝘁”. Kindly note that only complete applications sent via email with a CV and motivation letter will be considered.

🔗 Find out more about the position and what we are looking for here: https://www.patvocates.net/executive-assistant-ceo/

20/05/2025

🌍 On , we honour those who make research possible: the who choose to participate.

As Jan Geissler, founder of Patvocates and leukaemia survivor, shares:
"𝘞𝘩𝘦𝘯 𝘐 𝘸𝘢𝘴 𝘥𝘪𝘢𝘨𝘯𝘰𝘴𝘦𝘥 𝘸𝘪𝘵𝘩 𝘊𝘩𝘳𝘰𝘯𝘪𝘤 𝘔𝘺𝘦𝘭𝘰𝘪𝘥 𝘓𝘦𝘶𝘬𝘢𝘦𝘮𝘪𝘢 𝘪𝘯 2001, 𝘢𝘵 𝘵𝘩𝘦 𝘢𝘨𝘦 𝘰𝘧 28, 𝘵𝘩𝘦 𝘰𝘥𝘥𝘴 𝘰𝘯 𝘴𝘶𝘳𝘷𝘪𝘷𝘢𝘭 𝘰𝘯 𝘴𝘵𝘢𝘯𝘥𝘢𝘳𝘥 𝘵𝘩𝘦𝘳𝘢𝘱𝘺 𝘥𝘪𝘥 𝘯𝘰𝘵 𝘭𝘰𝘰𝘬 𝘨𝘳𝘦𝘢𝘵. 𝘓𝘶𝘤𝘬𝘪𝘭𝘺, 𝘐 𝘧𝘰𝘶𝘯𝘥 𝘢 𝘤𝘭𝘪𝘯𝘪𝘤𝘢𝘭 𝘵𝘳𝘪𝘢𝘭 𝘸𝘪𝘵𝘩 𝘵𝘸𝘰 𝘪𝘯𝘷𝘦𝘴𝘵𝘪𝘨𝘢𝘵𝘪𝘰𝘯𝘢𝘭 𝘥𝘳𝘶𝘨𝘴. 𝘛𝘩𝘪𝘴 𝘪𝘴 𝘵𝘩𝘦 𝘳𝘦𝘢𝘴𝘰𝘯 𝘸𝘩𝘺 𝘐 𝘢𝘮 𝘴𝘵𝘪𝘭𝘭 𝘩𝘦𝘳𝘦 𝘵𝘰𝘥𝘢𝘺."

His story, like those of many others, is a powerful reminder that clinical research does more than produce data — it saves lives. Thanks to research, what was once a lethal disease can now be managed as a chronic condition.

At , we continue to call for that are created in collaboration with patients, reflect real-world needs and support informed, inclusive participation. The involvement of is not optional, but essential to , and better outcomes in .

16/05/2025

We are proud to share that Jan Geissler, CEO of Patvocates, has co-authored an article recently published in Nature Reviews Bioengineering alongside Steven (Steve) Bourke, Vera Pinto Gomes, and Matthew May. 🗎 Read the full article here: https://rdcu.be/ekhhn

The article explores the importance of involving as co-creators in healthcare technology, providing insights into patient community engagement and resources for the inclusion of the public and patients. It makes the case for a critical shift in - moving beyond the involvement of individuals toward structured collaboration with patient communities.

Patients bring invaluable lived experience, but communities contribute collective memory, depth and strategic insight, making engagement truly transformative.

The article also highlights key initiatives and frameworks from various organisations that have shaped the evolution of patient engagement, including collaborative training programmes, good lay summary practices, patient preference studies, and regulatory guidance - as well as methods co-developed by Patvocates to foster impactful, sustainable engagement.

Congratulations to all the co-authors, and a special thanks to Steve Bourke for coordinating this important publication!

15/05/2025

🚨 𝗪𝗲 𝗮𝗿𝗲 𝗵𝗶𝗿𝗶𝗻𝗴 𝗮𝘁 𝗣𝗮𝘁𝘃𝗼𝗰𝗮𝘁𝗲𝘀! Are you a motivated 𝗝𝘂𝗻𝗶𝗼𝗿 𝗟𝗲𝗴𝗮𝗹 𝗢𝗳𝗳𝗶𝗰𝗲𝗿 with a keen interest in patient engagement? Join our dynamic team and contribute your expertise to projects that create impact across a variety of initiatives. This position is home-based in Spain.

📩 To apply, please email your 𝗖𝗩 𝗮𝗻𝗱 𝗺𝗼𝘁𝗶𝘃𝗮𝘁𝗶𝗼𝗻 𝗹𝗲𝘁𝘁𝗲𝗿 letter to HR@patvocates.net with the subject line: “𝗔𝗽𝗽𝗹𝗶𝗰𝗮𝘁𝗶𝗼𝗻 𝗝𝘂𝗻𝗶𝗼𝗿 𝗟𝗲𝗴𝗮𝗹 𝗢𝗳𝗳𝗶𝗰𝗲𝗿”. Kindly note that only complete applications sent via email with a CV and motivation letter will be considered.

🔗 Find out more about the position and what we are looking for here: https://www.patvocates.net/junior-legal-officer/

14/05/2025

At the recent 6th EORTC Quality of Life in Cancer Clinical Trials Conference in Barcelona, Jan Geissler contributed to important discussions on advancing the role of patient-reported outcomes (PROs) and patient preferences in cancer research.

In his talk, Jan covered the essential triangle of patient-reported toxicity, PROs and patient preferences, drawing on community perspectives and insights from WECAN - Workgroup of European Cancer Patient Advocacy Networks' EuroACT data. Of the 24,797 cancer and hematology clinical trials conducted in Europe over the past five years, only about one fifth measured PROs at all, and less than 2% published their PRO data — a clear reminder that patient experience must not be overlooked in evidence generation.

Speaking also on behalf of Ananda Plate, Jan highlighted how survivorship, quality of life and the need for product-independent patient preference studies must become core pillars of oncology research, regulation and access decision-making.

Through initiatives such as EuroACT — led by a steering committee of pan-European patient organisations from cancer and non-malignant hematology and implemented by the European Patient Advocacy Institute with the support of experts like Lis Puga — the patient community is working to strengthen the role of patient-generated evidence in shaping future care and systems.

We are pleased to see progressive efforts by the European Organisation for Research and Treatment of Cancer (EORTC) and other organisations in this space to facilitate opportunities for thought leadership and meaningful discussions that help advance patient engagement research.



Photos: EORTC & Jan Geissler

13/05/2025

Last week, our Patvocates and European Patient Advocacy Institute teams came together from across Europe for an inspiring retreat in the scenic springtime surroundings near Girona, Spain.

Over four days, we stepped away from our virtual desks to collaborate in person, working intensively on refining our strategy, identifying future directions and pitching innovative ideas. Through teamwork and shared expertise, we developed and sharpened opportunity areas that will help us continue to drive meaningful, patient-focused impact.

Beyond the working sessions, it offered us a valuable chance to reconnect as colleagues, strengthen our bonds and spark new ideas over shared conversations, a few unforgettable meals and, of course, rousing karaoke performances!

It was a fantastic reminder of the energy and creativity that happens when passionate, mission-driven people from different backgrounds come together with a shared purpose. We are excited about the next chapter and even more motivated to keep raising the bar for impactful patient engagement.

02/05/2025

The European Pulmonary Fibrosis Federation Patient Advocacy Forum 2025 in Frankfurt marked another important step in strengthening the advocacy community across Europe. From 24–27 April, advocates, experts and partners came together to build capacity and advance the role of the patient voice in pulmonary fibrosis.

Throughout the forum, participants engaged with key topics including disease-specific issues, patient involvement in research and development, health economics, evidence-based advocacy, diversity, equity and inclusion, and effective communication and information strategies. With leading experts from the fields of pulmonary fibrosis, patient advocacy, regulation and industry contributing to the discussions, the programme was designed not just to inform, but to equip advocates with the knowledge and confidence to engage effectively at both national and European levels.

Patvocates has supported the European Pulmonary Fibrosis Federation (EU-PFF) as Secretariat since 2019, and we were proud to contribute once again to the success of this important initiative. Warm thanks to our team — Maria Gomez, Linda Silva, Georgina Ubide, Inés Cañada and Lillian Judd — for their outstanding coordination, and to Alfonso Aguarón, Ana Amariutei and Khullat Munir for delivering insightful training and facilitating meaningful dialogue throughout.

Congratulations to EU-PFF President John K. Solheim and the entire board for curating a programme that continues to drive impact across the patient community. We remain committed to supporting this important work.



Photos courtesy of the EU-PFF