Written by Andri Phoka, President of Agora and Trustee of ASIF
AGORA is an umbrella platform representing patient organisations of people with Rheumatic and Musculoskeletal Diseases (RMDs) in Southern Europe. Each year our annual conference takes place in a different country hosted by one of our member associations. This year, the Association for Patients with Rheumatic Diseases Montenegro (NVO RAM) hosted the conference. The theme was Empowerment to manage our own health and our own care.
Delegates at the AGORA Conference
Throughout the two days, we had the honour of hosting expert speakers from our partner organisations around Europe and the USA. They shared knowledge on mental health, strategic planning, empowerment and raising awareness. Mr Raj Mahapatra, President of National Axial Spondyloarthritis Society (NASS) in the UK, spoke about how patient organisations can be successful and expanded on strategic planning. I presented a project together with ASIF on how other countries work and how we can raise awareness for patient associations.
Funding from our industry supporters enabled us to create a professional and high-level conference, which will impact the advocacy work of patient associations. The feedback from delegates was overwhelmingly positive.
The AGORA Annual Conference will be hosted by ARAM in Malta in 2024.
ASIF has recently gained six new members from Aruba, Brazil, Montenegro, Pakistan, Panama and The Netherlands. We are delighted to introduce Gruparj Petrópolis Institute from Brazil and Arthritis Care Foundation from Pakistan below.
Gruparj Petrópolis Institute, Brazil
Written by Wanda Heloisa Ferreira
“Gruparj Petrópolis Institute completes 22 years of fulfilling its mission: to educate and mobilise society towards the importance of prevention, diagnosis, treatment and early rehabilitation of rheumatic diseases, through health education.”
The Arthritic Patients Group of Rio de Janeiro in Petrópolis – Instituto Gruparj Petrópolis was founded in 2001 with the support of the Rheumatology Society of Rio de Janeiro. In 199 the society held the first Forum for Laymen on Rheumatism in Rio de Janeiro. At the time, rheumatologists observed the population’s lack of knowledge about rheumatic diseases. Since then, Gruparj has worked to meet the needs and interests of people with rheumatic diseases, especially Rheumatoid Arthritis and Spondyloarthritis.
The purpose of the institution is to promote social assistance through information, education and support for people with rheumatic and related diseases; enable and rehabilitate people with functional limitations for the job market; promote patient integration into society; and offer multidisciplinary care to people with rheumatic diseases.
Achievements in Numbers
These numbers are not just statistics; they are tangible testimonies of our positive impact and ongoing commitment to a future with a higher quality of life for people with rheumatic diseases.
2,100 members: A solid community that continues to grow, strengthening connections and collaborations.
10 thousand services per year: Commitment to support, resources and opportunities for our community.
30 thousand people reached: Extending our influence beyond borders, serving not only members, but the community in general.
53 Health Education Courses on Rheumatic Diseases carried out: providing knowledge about treatment, specificities of rheumatic diseases and quality of life for people with rheumatic pathologies across the country.
Comprehensive and Interdisciplinary Service
What makes Instituto Gruparj Petrópolis truly special are its comprehensive activities and services, designed to optimise the physical, emotional and social rehabilitation of people with rheumatic diseases. Our main activities are: lectures, congresses, occupational rehabilitation workshops including through painting and crafts, medical and psychological care and rehabilitation. To achieve this, we count on the effective collaboration of doctors, physiotherapists, occupational and body therapists, psychologists, nutritionists, art therapists, who develop interdisciplinary work, taking into account programming that optimises the physical, emotional and social rehabilitation of people with rheumatic diseases.
Comprehensive and Innovative Support
Multidisciplinary service
Patients meditating
Instituto Gruparj offers medical, psychological, physiotherapeutic, nutritional care, among others, aiming to optimise the physical, emotional and social rehabilitation of patients.
Therapeutic Support – Weekly consultations with a rheumatologist and nutritionist.
Physiotherapy Support – Highlight is the stretching services, offering not only targeted exercises, but also a recreational moment for patients.
Psychological Support – A fundament
al pillar, with group and individual services.
Rehabilitation through Art: Art and Life Project – The project uses art as a means of physical, emotional and social rehabilitation, with weekly workshops.
Educational Events and Awareness Campaigns
The Institute promotes educational events such as lectures, congresses and occupational rehabilitation workshops through art, such as painting and crafts.
A highlight is the Social Medical Meeting on Rheumatic Diseases, bringing together approximately 450 participants annually. In addition, 53 Health Education courses have already been held in Brazil and Portugal.
Awareness campaigns
The social responsibility of Instituto Gruparj Petrópolis is evident in its annual awareness campaigns, open to the community. Annually, the Institute promotes campaigns open to the community on Hepatitis, Osteoporosis, Rheumatoid Arthritis, Lupus, Psoriatic Arthritis and Ankylosing Spondylitis, among others.
Financial Strategy
The institution remains resilient through financial strategies, mobilising resources and seeking support from foundations, companies, the public sector, individual donors, donation campaigns and events, as well as participation in public notices.
In its 22-year journey, the Gruparj Petrópolis Institute has fulfilled its mission, and exceeded expectations, becoming an institution that promotes hope and support for those facing rheumatic diseases. Its trajectory is an inspiration to everyone, highlighting that, with commitment and innovation, we can truly transform lives and communities.
Arthritis Care Foundation (ACF) became a registered trust in 2010 for the welfare of patients with rheumatic diseases in Pakistan. It is the only non-for-profit organisation in Pakistan, striving to provide free and subsidised treatment to less privileged patients from all walks of life. In 2010, three founding members started volunteer services. As of today, eight volunteer rheumatologists and twelve doctors on ACF’s payroll provide services at ACF Centre and five collaborative projects.
Patients’ Care: ACF provides medications (including biologics), diagnostic support and joint replacements for indigent arthritis patients. Apart from patient care, supporting rheumatology fellowship training programmes and arranging awareness seminars are our main objectives. Since inception, PKR 382 million (USD 2.3 million) has been spent on providing free and subsidised treatment to thousands of arthritis patients.
Prof. Nighat Mir examining a patient who lives with rheumatoid arthritis
Each year ACF spends approximately PKR 17,500,000 (USD 61,000) and PKR 20,000,000 (USD 72,500) on provision of biologics and JAK-inhibitor drugs respectively; a significant portion of which is being used for treatment of SpA patients and SLE patients.
In a less developed country like Pakistan, the cost of treating rheumatic diseases is very high, there is little support from the public sector and no health insurance facilities. The Sehat Sahulat Card scheme, recently launched by the government, covers outpatient treatment but does not support full treatment, which leads to many patients suffering poor outcomes and delayed diagnostics.
Teaching and Training: Despite international standards recommending at least 2500 rheumatologists for a population of more than 240 million, Pakistan only has 125 qualified registered rheumatologists. To meet the dire need of specialists, ACF started scholarship support for teaching and training programmes in collaboration with various teaching institutions.
So far 31 rheumatologists have been trained by the ACF Faculty, covering more than 50% of total practising rheumatologists in Punjab province of 120 million. Out of these, 21 specialists have fully or partially been trained through the ACF scholarship programme. ACF funded rheumatologists are not only working in the public and private sector of Pakistan but they are also serving abroad (UK and Middle East). So far around PKR 42 million (USD 2.39 million) has been spent on a scholarship programme for fellows undergoing training.
Education and Research Activities: ACF is consolidating its research endeavours in collaboration with renowned national and international teaching and research institutions. Partnering with the Fatima Jinnah Medical University (FJMU) and National Institute of Health (NIH) USA, ACF is conducting research involving the genetics of lupus in patients and their families. ACF faculty recently conducted research on prevalence of musculoskeletal disorders through a grant by WHO. The ACF team also organised a nine months educational programme for family physicians, covering rigorous modules, with the help of ILAR funding. ACF has set up a support group for ankylosing spondylitis and lupus patients (pictured). Expert rheumatologists and psychologists provided their expert opinions to all registered patients and families in the support group.
Advocacy programmes: ACF team has been actively involved in raising awareness among the general public, physicians and medical students through educational seminars, walks, interviews and public relationship activities. This is part of the ACF commitment towards public awareness about these diseases.
“Gruparj Petrópolis Institute completes 22 years of fulfilling its mission: to educate and mobilise society towards the importance of prevention, diagnosis, treatment and early rehabilitation of rheumatic diseases, through health education.”
Arthritis Care Foundation (ACF) became a registered trust in 2010 for the welfare of patients with rheumatic diseases in Pakistan. It is the only non-for-profit organisation in Pakistan, striving to provide free and subsidised treatment to less privileged patients from all walks of life. In 2010, three founding members started volunteer services. As of today, eight volunteer rheumatologists and twelve doctors on ACF’s payroll provide services at ACF Centre and five collaborative projects.