Patient Research Partners

Arnon Katz (1955, Israel) has joined GRAPPA as a PRP in 2019, after being referred by his PsA physician.

He has been since involved in various activities, such as the GRAPPA education committee, the Treatment Recommendations Psoriasis Group, and the Ultra-Sound Group.

Within the last year he has been a member of the joint GRAPPA-SPARTAN steering committee. After intense planning, the team won the Pfizer Educational Grant. It led to a 12 module educational series for presenting various aspects of the PsA. This program has been running worldwide since the beginning of 2021 with multi-national professionals and participants.

Arnon has been diagnosed with PsA in 2002 and is treated at present with biological treatment in combination with MTX.
In the HIPPOCRATES project, Arnon is a co-opted member to the Patient Advisory Council representing GRAPPA-EU and contributes as a PRP to WP3 and WP4.

David Trigos-Herraez (1979, Spain) PhD, has been active in Psoriasis and Rheumatology patient organizations at local, national, and international level for more than 10 years. He held the position of Vice-president of Europso, European umbrella for psoriasis organizations in 2016, and IFPA, International Federation of psoriasis associations board member since 2019.

He works as Coordinator of the Spanish platform of EUPATI. European patient academy on therapeutic innovation.

He works towards the professionalization and empowerment of patient organizations in the field of research, development, and evaluation of new therapeutic alternatives.

He is Individual expert advisor at EMA (European medicines agency) since 2016 and PRP (Patient research partner) in some projects.

David has psoriasis since 1998 and psoriatic arthritis since 2013 and is successfully treated with biological treatment in combination with MTX.

In the HIPPOCRATES project, David is a member of the Patient Advisory Council and contributes as a PRP to WP1 and WP2.

Elsa Mateus (1971, Portugal) PhD has been active in rheumatology patient organisations for more than 10 years. She was Chair of the EULAR PARE Committee, representing People with Arthritis/Rheumatism in Europe (2019-2021). She is a Patient Research Partner (PRP) in EULAR since 2013, and EUPATI Fellow (European Patients’ Academy on Therapeutical Innovation - Patient Expert Training Course) since 2015.

Her experience on patient involvement in research includes reviewing lay summaries and grant applications, contributing to several study groups and task forces. She was EULAR/PARE Coordinator for the HarmonicSS’ project (2017-2020), coordinating the Patients’ Advisory Group and the input for different Work Packages. She participated in several IMI and H2020 grant applications, concerning the involvement of patients. Her involvement in research in the field of rheumatology was acknowledged in 2020 with the award of a Medal of Merit in Science, by the Ministry of Science, Technology, and Higher Education of Portugal. She is co-author of several publications and peer reviewer.

Within HIPPOCRATES, Elsa is a co-opted member of the Patient Advisory Council representing EULAR PARE. She was diagnosed with Juvenile Idiopathic Arthritis in 1977. She is President of the Board of the Portuguese League Against Rheumatic Diseases and of EUPATI Portugal.

Education: Biomedical laboratory scientist.

Member of: EULAR PARE, GRAPPA PRP, FOREUM scientific committee and Diakonhjemmet patient advisory board.

Examples of contributions as a PRP:

• Development of the Psoriatic Arthritis Impact of Disease-score (PsAID).
• Task Force member for the development of the EULAR management recommendations for PsA.
• HIPPOCRATES PRP in WP1 and WP2 and member of the Patient Advisory Council.

Henk Hulshuizen (1946, Netherlands), Master of Law, has been active in psoriasis patient organizations at local, national, and international level for more than 40 years. Since 2016 he has held the position of secretary of EUROPSO. He is a member of the board of the Foundation for Scientific Research Psoriasis and research partner at the Psoriasispatiënenvereniging Nederland.

In the past, as a board member of Dutch psoriasis patient organizations, he has participated in the introduction of Fumaricacid treatment for psoriasis patients in the Netherlands and, in 2011 and 2016, he was also a member of the working group of the Dutch Association Dermatology and Venerology (NVDV) for the revision of Guidelines for treatment of Psoriasis.

Henk has had psoriasis since 1972 and initially also psoriatic arthritis for several years. He has had almost all treatments and has been treated with biologicals since 2005, lately with Humira in combination with Psorinovo.

In the HIPPOCRATES project, Henk is a member of the Patient Advisory Council and contributes as a PRP to WP7.

Jaime was diagnosed with psoriasis at the age of 40 and discovered a few years later that, fortunately, he did not have the disease. Meanwhile, he embraced the causes of patients with psoriatic disease and joined PSOPortugal, the Portuguese Association of Psoriasis, as a volunteer in the first year of its foundation in 2005. Since 2016, he has been president of the organization and tirelessly advocates for the rights of people with psoriatic disease with the objective of improving their quality of life.

On behalf of PSOPortugal he is a member of the governing bodies of FENDOC – Portuguese National Federation of Chronic Diseases and part of the Superior Council of the National Health Convention.

Internationally, he is a Member of the Board and Chair of the Community Advisory Board of Europso and participates in the committee for World Psoriasis Day at IFPA - International Federation of Psoriasis Associations. He is also part of Novartis Psoriatic Disease Council and Janssen Patient Advisory Board.

Jaime is graduated in telecommunications and electronics engineering with over 30 years of experience in the information technology sector. Currently, he works as Marketing Manager in a Portuguese company, implementing videoconferencing solutions. In the HIPPOCRATES project, Jaime is a PRP representative in the External Advisory Board.

My name is Jan Koren, born 8. April 1987, live in Slovenia. I am CEO of the SPA-LAND d.o.o. company. My company sells wellness equipment and cosmetics. Since 2016, I am the President of EUROPSO (the European Umbrella Organisation for Psoriasis Movements) and since 2019, President of the Psoriasis Association in Slovenia.

In my spare time, I spend time on trips with my family and reads books.

In the HIPPOCRATES project, I am a co-opted member to the Patient Advisory Council representing EUROPSO and I contribute as a PRP to WP1 and WP2.

Lars F. Werner (1959, Denmark) M.Sc. (Econ) has been active in the field of dermatology since 1990. He is currently CEO of the Danish Psoriasis Association (https://psoriasis.dk) and has resided as patient advocate and board member of the board implementing precision medicine in Denmark, today known as the National Genome Center (https://eng.ngc.dk)

He is an active member of IDEOM and the principal patient advocate in the implementation of PRO (Patient Reported Outcome) for psoriasis in Denmark (https://pro-danmark.dk/da/omraader/psoriasis)

Lars serves as patient advocate in a number of national, European, and global advisory boards sharing his expertise in developing innovative treatments for patients living with psoriatic diseases.

Prior to his commitment to serve as a patient advocate Lars have a long-standing career in the pharmaceutical business with special focus on developing treatment regimens for people living with psoriatic diseases (https://www.linkedin.com/in/lars-werner-2659a03) Lars is a not only a patient himself but also relative to family members with chronical inflammatory autoimmune diseases. All are well treated.

In the HIPPOCRATES project, Lars is a member of the Patient Advisory Council and contributes as a PRP to WP2 and WP3.

Maarten de Wit (1961, Netherlands) PhD has been active in rheumatology patient organizations at local, national, and international level for more than 20 years. He held the position of EULAR vice president representing People with Arthritis/Rheumatism in Europe (PARE) between 2005-2009. Maarten is a longstanding OMERACT Patient Research Partner (PRP) and was a founding member of the GRAPPA patient research partner network.

He actively contributed to the development of the Psoriatic Arthritis Impact of Disease-score (PsAID) and published as first author a case study on patient involvement in the development of Patient Reported Outcomes, demonstrating the advantages of multiple forms of engagement to ensure representativeness of the patients’ perspective. He was also a Task Force member for the development of the EULAR management recommendations for PsA. Finally, Maarten contributed to the early stages of writing the IMI grant application and is now one of the co-leads for WP7 on dissemination within HIPPOCRATES. He has a strong interest in supporting the psoriasis cohort study in WP2 and is member of the working group for WP4 as well as a member of the Patient Advisory Council.

Maarten has psoriatic arthritis since 1984 and is successfully treated with biological treatment in combination with MTX.

Rodrigo Firmino lives in Curitiba, southern Brazil, and is a GRAPPA PRP member since 2016 and has participated in all GRAPPA annual meetings ever since. Within the HIPPOCRATES project, Rodrigo is a PRP representative in the External Advisory Board.

Professional background: associate professor in urban management at the Pontifical Catholic University of Parana, Rodrigo has a PhD in urban planning from Newcastle University (2004) and a MPhil in architecture and urbanism from University of São Paulo (2000). He is also a founding member of the Latin American Network of Surveillance, Technologies and Society Studies (LAVITS).

Rodrigo has psoriatic arthritis since 2004 and has been successfully treated with biological treatment.

Souzi holds a BA degree in Economics and has completed a course at the Open University UK, in the field of Psychology. She has been working as volunteer with the Cyprus League against Rheumatism (CYPLAR) since 2008 and currently holds the position of the Vice- President. She was diagnosed with a rheumatic disease in 2008. Souzi has been trained as a Patient Research Partner by EULAR and she has become a EUPATI Fellow, after completing a 14-month course in the research and Development of Medicines. Souzi Makri has been the Chair of AGORA from September 2011 to September 2017, the year she was appointed as Honorary Chair. From 2015- 2019 she has been the President of ENFA (European Network of Fibromyalgia Associations). She is currently the Chair elect for EULAR PARE. In the HIPPOCRATES project, Souzi is a member of the Patient Advisory Council and contributes as a PRP to WP1.

Wendy Olsder (1995, Netherlands), MSc, has been active in young rheumatology patient organizations at national and international level for almost 10 years. She was the chair of the national young patient organizations in the Netherlands, Youth-R-Well, and a member of the Young Working Group of People with Arthritis/Rheumatism in Europe (PARE). Currently, Wendy is a member of the GRAPPA patient research partner network and actively contributes as a patient research partner to various studies on both national and international level.

Wendy is a PhD candidate at the Eindhoven University of Technology, where she focuses on developing optimization models for faster and affordable access to treatments for rare diseases. She has a strong interest in supporting the psoriasis cohort by combining her own background of operations research in WP5.

Wendy has psoriatic arthritis since 2010 and is successfully treated with a JAK inhibitor.

In the HIPPOCRATES project, Wendy is a member of the Patient Advisory Council and contributes as a PRP to WP5.