At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America.
The ASIF Council Meeting in Bogota at the end of last year was a great success with nearly 50 representatives from 25 countries across all continents. Our members shared ideas and experiences, whilst experts spoke about the latest developments in axSpA research, the role patient organisations can play in psychosocial health and many other topics.
At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America.
Alongside patient organisations, the committee includes rheumatology; physiotherapy and rehabilitation; nursing; psychology; and epidemiology experts. The EAC is geographically diverse with members from five continents. The steer of the committee ensures that ASIF’s work is impactful, relevant and credible; and that we are able to explore new opportunities from a range of different healthcare perspectives.
The committee met for the first time on 4 March laying the foundations for their role in guiding ASIF’s future work.
We are grateful for each of the members of the committee for their guidance and commitment to improving the lives of people living with axSpA.
The committee includes:
We are delighted to welcome René Bräm as ASIF’s new Treasurer. Rene is the director of the Swiss Ankylosing Spondylitis Association and is a board member and trustee of national associations and foundations in Switzerland. René has supported ASIF since its foundation, when for many years he was the treasurer as well as working as an auditor. With his renewed involvement as treasurer, he commented that he would like to contribute to people with axSpA being diagnosed earlier, being able to cope with everyday life and participate in social life despite the disease.
As our previous Treasurer, Susan Davies stepped down between AGMs, the Trustees co-opted René at their meeting in Istanbul in February. René will be invited to nominate himself prior to the election at the AGM later this year where ASIF members will have the opportunity to vote for him to remain in the role.
At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America.
At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. This helps ASIF provide support which reflects the real-life challenges facing patients and our member organisations.
We are now increasing our focus on Latin America. This began last November at the EULAR PARE meeting of patient advocates. A few people from outside Europe had been invited, including a representative of the ASOPAN network of 60 Latin American associations that support patients with rheumatic conditions.
Through discussions over the following months, including at April’s PANLAR conference in Colombia, we realised there was a great opportunity to form a partnership between our two organisations. We can learn from ASOPAN about the key issues and challenges across Latin America, and then adapt ASIF’s support to best meet the regional context. This will help ASOPAN’s members integrate axSpA into their activities.
At next month’s Council meeting in Bogotá, our participants from Latin America will start work one day early with an extra meeting looking at the role of patient organisations in helping people with axSpA in Latin America. We will spend the day discussing the challenges facing people with axSpA in the region; gaining practical insights from ASIF’s Latin American members about how they address these challenges and support people with axSpA; and outlining a future programme of activity between our two network organisations.
We hope this will not only be a successful new initiative, but will also be a model we can adapt to other parts of the world. We are very excited about this and look forward to telling you more about it in future.
At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America.
Collaboration is a vital step in improving the lives of people living with axSpA. ASIF and The Pan American Network of Associations of Rheumatic Patients (ASOPAN) held a joint Latin American Regional meeting the day before the ASIF Council Meeting began in Bogotá. This meeting was the first of its kind and resulted in representatives from Patient Organisations in Brazil, Chile, Panama, Mexico, and Colombia sharing experiences and discussing the needs of their members.
ASOPAN (The Pan American Network of Associations of Rheumatic Patients) is a network of patient organisations throughout Latin America supporting patients with RMDs. Of their members, few specialise in axSpA and many have limited knowledge of the disease. One objective of this meeting was to explore how ASOPAN and ASIF could work together. After a stimulating day of discussions and learning, it was agreed that ASOPAN would create a working group on axSpA and ASIF would assist in the development of a workplan to educate patient organisations in the region on axSpA. This would both enable them to better support people living with axSpA and raise awareness of the disease across the continent.
ASIF and ASOPAN signed a Memorandum of Understanding (MOU) which will underscore our future work together. Both foundations, along with the patient organisations are committed to using this partnership to improve the lives of people living with axSpA across Latin America.
A report on this meeting will be available soon.
At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America.
During the ASIF Council Meeting our Members had the opportunity to display and present posters about their work.
It is inspiring to see the incredible efforts being undertaken around the world to improve the lives of people living with axSpA.
At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. We are now increasing our focus on Latin America.
At ASIF we are always working to increase our understanding, from an axSpA perspective, of the differences between countries’ healthcare systems and the often complex social issues that affect people’s health. This helps ASIF provide support which reflects the real-life challenges facing patients and our member organisations.
We are now increasing our focus on Latin America. This began last November at the EULAR PARE meeting of patient advocates. A few people from outside Europe had been invited, including a representative of the ASOPAN network of 60 Latin American associations that support patients with rheumatic conditions.
Through discussions over the following months, including at April’s PANLAR conference in Colombia, we realised there was a great opportunity to form a partnership between our two organisations. We can learn from ASOPAN about the key issues and challenges across Latin America, and then adapt ASIF’s support to best meet the regional context. This will help ASOPAN’s members integrate axSpA into their activities.
At next month’s Council meeting in Bogotá, our participants from Latin America will start work one day early with an extra meeting looking at the role of patient organisations in helping people with axSpA in Latin America. We will spend the day discussing the challenges facing people with axSpA in the region; gaining practical insights from ASIF’s Latin American members about how they address these challenges and support people with axSpA; and outlining a future programme of activity between our two network organisations.
We hope this will not only be a successful new initiative, but will also be a model we can adapt to other parts of the world. We are very excited about this and look forward to telling you more about it in future.
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.
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.
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
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.
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.
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.
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.
Find out more at: https://gruparjpetropolis.com.br
Written by Asad Ali
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.
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.
Find out more at https://arthritiscarefoundation.org
