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Call of Interest: Six week course for Tutors in Self Management in conjunction with Health Prevention and Disease Unit

ARAM Membership Form 2022-2023

New ARAM Membership Form 2021-2022 

EUPATI Fundamentals Training partly sponsored by Malta Council for the Voluntary Sector (MCVS)

EUPATI Fundamentals Training partly sponsored by Malta Council for the Voluntary Sector (MCVS)

Sina Bugeja, Vice President of ARAM (Arthritis and Rheumatism Association Malta) has followed the EUPATI Fundamentals training that was held online over 2 full days due to Covid-19 restrictions. The training was organized by the European Patients’ Training Academy on Therapeutic Innovation which is based in Brussels, Belgium.

The course was a mix of practical and classroom learning guides aimed at professionals focusing on the processes of engaging patients throughout the stages of medicines development providing a strong foundation for successful partnership between the patients and patient organizations and the pharma industry itself. The focus of the course remained basic knowledge about patient involvement with an overall introduction to standards and best practices, and a library of practical exercises. The training also encouraged patients’ organisations representative to ensure that members who are also patients become involved in research, drug trials and lay literature writing. Furthermore, when exposed to such activities, patients will also be empowered to develop a stronger voice and represent themselves in more assertive ways especially with regards to patients’ rights.

The course was subdivided into a number of modules.

• Principles of patient engagement where the focus was the comprehension of the benefits all around for patient engagement in medicines in R&D. Within the western world, this is the only way forward where patients are involved at the various stages and give regular feedback to R&D and are considered as active, indispensable partners;
• Patient engagement roadmap where the requirements and precise time points at which patient engagement should occur was discussed in detail with a clear focus on the benefits elicited from this for both the patient community and the industry;
• Setting up a patient engagement activity where through a hands-on practical approach, an engagement exercise was carried out and was discussed and evaluated at the end of the day. The types of interactions and which patient profiles should be used at different stages of medicines R&D was addressed;
• Quality criteria in patient engagement: a very relevant module that helped participants to identify typical instruments used to identify relevant patients’ protocols for recruiting them;
• Moving from Theory to Practice based on practical Expected local reactions had to be indicated and these challenges addressed so as to minimize recruited losses when operationalizing patient engagement. The cultural differences in behaviour were discussed.

Further discussion focused on the pharma sponsorships which are, in actual fact indispensable but do not control in any way the input from patients nor the outcome conclusions. The ethical issue as to whether patients should be compensated for their expertise and time was highlighted and discussed and a clear agreement arrived at. Fair compensation for patients’ and patients’ advocates is imperative. The Quality of Life [QoL] endpoints were defined as the only acceptable terminations using both qualitative and quantitative methods in the research methodology. The training proved to be very interesting and beneficial and was partly sponsored by the Malta Council for Voluntary Organisations.

ARAM congratulates Mrs Sina Bugeja M.Sc.(Wales)

SIS PROJECT 2021

Thanks to the grant from The Small Initiative’s Scheme managed by The Malta Council for the Voluntary Sector (MCVS), our project Keeping Mobile and Pain Free During Covid-19, successfully came to an end.  ARAM thanks all participants, service providers, and SIS Fund Managers at MCVS for their kind assistance.

6th Webinar/Video Tous Include

ARAM in collaboration with The Aristotle University of Thessaloniki, Greece, and associations from Greece, Cyrus, and Spain are taking part in a European research project on osteoarthritis pain. This project focuses mainly on patients’ perspectives and how pain is dealt with. We are happy to present a series of educational webinars, a series where expert discussions on different aspects of ‘Living with osteoarthritis’ are conducted. We encourage patients to watch the entire series of webinars to learn about the holistic approach to improving one’s health and pain management. The topics discussed in this sixth webinar discusses Innovative Technologies in tackling Chronic Pain

5th Webinar/Video Tous Include Project

ARAM in collaboration with The Aristotle University of Thessaloniki, Greece, and associations from Greece, Cyrus, and Spain are taking part in a European research project on osteoarthritis pain. This project focuses mainly on patients’ perspectives and how pain is dealt with. We are happy to present a series of educational webinars, a series where expert discussions on different aspects of ‘Living with osteoarthritis’ are conducted. We encourage patients to watch the entire series of webinars to learn about the holistic approach to improving one’s health and pain management.

The topics discussed in this fifth webinar include:

Mindfulness technique: a “good life” help to dare to be ourselves

Vasiliki Christodoulou, Lecturer in Psychology, UCLan University, Cyprus, Licensed Psychologist

The role of the Health Visitor in the prevention and management of Osteoarthritis pain through Mind f ullness

Sisi Klitsa, Health Visitor, MSc Clinical and Community Psychology, Trained in EISA Systemic Counseling, Mindfulness instructor

Multidisciplinary Patient Care- the new era of Rheumatology – Eular Congress 2021

Multidisciplinary-patient-care_-the-new-era-of-Rheumatology-2021.docxDownload

Pierre Zammit speaks about his life with Psoriatic Arthritis

An interview with Nicky and her mother, speak about their lives with Juvenile Idiopathic Arthritis