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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

Pierre Zammit speaks about his life with Psoriatic Arthritis

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

Annual General Meeting 2021-President’s Speech and welcome to Dr. Chris Vassallo, Guest Speaker – Current and new medicines for RMD’s

We thank you for joining us at our 15^th Annual General Meeting. Our last Annual General Meeting was held on 31^st July 2020.  This is the second AGM during the Covid-19 pandemic, although last year we managed to meet face to face with great respect to mitigation measures as announced by the Health Authorities at the time. Mrs. Vella informed all present that  Mrs. Sina Bugeja, ARAM’s Vice-President will moderate this year’s virtual AGM. Whilst I welcome you to this year’s Annual General Meeting, I start by thanking the Executive Committee Members of ARAM for their ongoing hard work and dedication and for the valuable work each one is doing voluntarily.  I am happy to note that all our patient members are very appreciative of our input towards the Association.   For us all this year was not an easy year, however, we found alternative ways how to remain in touch with our treasured members. I wish to give you a very brief account of all the activities carried out by ARAM since our last AGM in July 2020. The issue of the change and switching of medicines to patients suffering from any type of Arthritis that occurred at the pharmacy level (without the consultation of one’s specialist).  As a patient organization we are working very hard to ensure that the EULAR recommendations are respected and undertaken by the authorities.  We are currently in communications with the Ombudsman (Health) to ensure that our patient members will receive the best possible treatment.   I take this opportunity to thank ARAM members who shared their personal experiences through printed and social media.  We celebrated World Arthritis Day 2020 with a virtual conference on the 21^st of October 2020.   Thanks to the support offered by  Vivian Corporation Malta we managed to organize a very well attended conference.  Amongst the distinguished guests who contributed towards the success of the conference, we had The Commissioner for Mental Health, Dr. John M Cachia,   Dr. Patrick Galea who talked about E-Health and the importance of telemedicine in the health system.  Thereafter,  Mr. Sebastian Micallef shared his experience as a patient.  He spoke about his personal experience and how he found E-Health useful especially throughout the time of the pandemic. The President, Mrs. Vella proceeded to give a brief account of current tasks being undertaken by the Executive Committee for the year 2021, namely, our applications for funds presented to Malta Council for the Voluntary Sector (Emergency Funds and SIS Funds;   two research programs with regards to Osteoarthritis, one on a national level and another on a bigger scale on a Pan-European level;  the upcoming AGORA conference hosted by ARAM on the occasion of its 10^th Anniversary;  the launch of two subgroups, one launched today, Young ARAM Group, as well in the coming weeks, the launch of the GOZO ARAM Group; as well as the Transfer of Knowledge Program in conjunction with EULAR and Arthritis Ireland.Mrs Vella once again thanked all for attending this year’s Annual General Meeting and sought approval from members present of the Minutes of last year’s AGM as well as the Financial Report for the year 2020 presented at this AGM.