Tag: ASIF

Webinar: HCP Education

Monday 19 May at 14:00-15:00 BST 

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The global delay to diagnosis in axSpA is unacceptable. 

One of the major barriers to getting a diagnosis is the lack of awareness and knowledge among primary care physicians and other healthcare professionals (HCPs).   

So how do we change this?

It’s not easy! We know that it can be challenging to connect with non-specialist HCPs to raise awareness of axSpA.

In this webinar, we will hear about some of the ways that three ASIF members have tackled this issue.  We know that healthcare systems differ between countries and so will explore activities that might work in different parts of the world and how ASIF might be able to support our members in this work. 

The presentations will be followed by a panel discussion, and Q&A.

Presenters:

Dr Dale Webb, CEO, National Axial Spondyloarthritis Society (NASS)

Dale Webb

Dr Dale Webb is CEO of NASS. With an MSc and PhD in health policy, he first worked in public health in the National Health Service and then as a health services researcher, undertaking numerous national evaluations of health policy interventions. Dale has worked in senior leadership charity roles for more 20 years. At NASS he has led the creation of a Parliamentary Group on axial SpA, the development of a quality improvement programme that has supported 23 rheumatology departments, and a campaign to achieve early diagnosis of axSpA.

 

Brenda Delodder, Executive Director of Canadian Spondyloarthritis Association (CSA)

Brenda Delodder

 

Brenda is the Executive Director of the Canadian Spondyloarthritis Association. Before joining CSA, Brenda served as CEO for several organizations including a regional food bank / food recovery charity, where she helped the organization distribute millions of pounds of fresh food to over 100 food banks and earned recognition among Canada’s top 10 charities nationally for social return on impact, and as CEO of the Canadian Orthopaedic Foundation, advancing research. With a strong track record in national policy advocacy and programming, she has contributed to major initiatives including the extension of the Compassionate Care Leave benefit program, shaping osteoarthritis care models and launching hospital screening programs for intimate partner violence.

Previously, Brenda was recognised as one of Canada’s top 10 women leaders for her leadership in COVID-19 emergency response and has held executive marketing and communications roles in the financial services sector.

 

Maranda van Dam, Chair and Founder of Axial Spondyloarthritis Association South Africa (ASASA)

Maranda van Dam

Maranda van Dam has been a patient advocate since 2018 when she was diagnosed with Ankylosing Spondylitis. Her son was diagnosed with JIA at the age of 15. Maranda is currently a scholar of EULAR as a Patient Research Partner. She is also a member of the iPARE committee. Maranda is a winner of the PARE Best Practice Fair 2022, SARAA Academic Excellence and Recognition Award and Finalist in the APPIS Innovator Awards for Middle East, Asia and Africa 2024. She is also a speaker at various conferences and events. “Giving a voice to a silent disease, has changed my life forever.”

 

 

 

Chair: Nadia Malliou MSc, ASIF Trustee

Nadia Malliou

 

Nadia is a licensed cognitive and experimental psychologist experienced in various professional settings both in mental health services, primary care services and administration. She’s an axSpA patient herself and focuses on RMDs and chronic pain working as a volunteer with EULAR PARE, the Pain Alliance Europe-PAE, the European Pain Federation EFIC, ASIF, the Hellenic League Against Rheumatism ELEANA and the Federation for Rare Diseases. Nadia recently started her PhD. Meanwhile, she’s a volunteer supporting patients in the Pain Unit of Thessaloniki General Hospital AHEPA. She has participated in several research projects either as a researcher or a patient research partner and has been an invited speaker in numerous conferences.

 

 

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Use the Contact Form or email communicationsmanager@asif.info to register.

ASIF Council Meeting Report

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.

Delegates at the ASIF Council Meeting 2024

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.

Read more about the Meeting in our Report

 

New Expert Advisory Committee

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.

Screenshot of EAC from ASIF website

ASIF has recently established a multi-disciplinary Expert Advisory Committee (EAC), which provides a healthcare perspective on ASIF’s work.

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:

  • Tuncay Duruöz, Turkey – EAC Chair
  • Wilson Bautista-Molano, Colombia
  • Deniz Bayraktar, Turkey
  • Christine Bundy, UK
  • Moataz Daoud, Canada
  • Marco Garrido-Cumbrera, Spain
  • Muhammad Asim Khan, USA
  • Robert Landewé, Netherlands
  • Ajesh Maharaj, South Africa
  • Nadia Malliou, Greece
  • Helena Marzo-Ortega, UK
  • Mwidimi Ndosi, UK
  • Andri Phoka, Cyprus
  • Yeliz Prior, UK
  • James Cheng-Chung Wei, Taiwan

Read more about the EAC members here

New Treasurer for ASIF

 

René Bräm

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.

Meet our other Trustees

Focusing 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. 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.

Globe with Latin America visible

First Latin American Regional Meeting

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.

Signing of MOU between ASIF and ASOPAN

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. 

ASIF Council Meeting 2024: Member Posters

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. 

Focusing 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. 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.

Globe with Latin America visible

Introducing our new Members!

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 logo“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
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.

​

Find out more at: https://gruparjpetropolis.com.br

Arthritis Care Foundation, Pakistan

Written by Asad Ali

ACF logoArthritis 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
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.

Find out more at https://arthritiscarefoundation.org