November 2024

New President for CEADE

It is with great enthusiasm that we inform you that after the CEADE General Assembly held in Cordoba on June 29th 2024, it was agreed that a new Board of Directors would assume the responsibility of the organisation.

Marco Garrido, who already served on the Executive Board as liaison with ASIF, has been elected as the new President, accompanied by an experienced team of patient representatives.

Marco has extensive experience in axSpA research, being responsible for the REUMAVID study, the Atlas of Axial Spondyloarthritis in Spain, the European Map of Axial Spondyloarthritis (EMAS) and the International Map of Axial Spondyloarthritis (IMAS), collaborating with rheumatologists from ASAS, several scientific societies in Rheumatology and patient representative members of ASIF, and rheumatologists and entities from more than 25 countries.

We thank Pedro Plazuelo Ramos for his great dedication and hard wor.k during the last 12 years as President of CEADE. His legacy has been fundamental for the positioning and credibility of the organisation.

ASIF would like to congratulation Marco and thank Pedro for his commitment to improving the lives of people living with axSpA. Marco is an invaluable supporter of ASIF and collaborator on IMAS.

Fundación de Espondilitis Anquilosante en Colombia

Since its creation, the Ankylosing Spondylitis Foundation in Colombia has contributed to helping those patients recently diagnosed, guiding, and promoting care to achieve a better quality of life and effectiveness in treatments or medical recommendations. The work carried out by the Foundation is achieved through social networks such as Facebook, Instagram, YouTube, LinkedIn and WhatsApp through which patients, caregivers, family members or other actors seek information and advice on Spondyloarthritis.

Patients are fundamental in the development of our mission, since we have sought to create a network of patients who multiply knowledge, who through education achieve empowerment for decision-making by making them participate in the responsibility of their care and in what can affect their health status. Likewise, we teach patients to have the ability to prepare their medical consultations in order to improve the doctor-patient relationship and ensure that health care is effective.

It is important that the Foundation seeks to raise awareness in society about Spondyloarthritis, which is an invisible disease in some cases and for which there is a lack of knowledge both in citizens and in the primary health care medical community; thus, through information campaigns in health care centers or public places, we deliver brochures that can raise awareness about a medical condition.

We have the support of stakeholders such as the academic and medical community who value the patient as an important actor in their research, trials, studies and seek to work hand in hand to innovate in pharmacological and non-pharmacological treatments and to have a better understanding of the condition in the patient by analysing the impact that a chronic disease brings with it.

We develop face-to-face meetings for patients, caregivers and family members that have the purpose of knowing and exchanging experiences, learning relevant aspects through the direct interaction of patients and health professionals.

Patient representation is essential before health authorities since policies are changing and it is necessary to have their opinion on those reforms that may affect medical care and treatments. To this end, the Foundation interacts with other patient organisations to defend and voice their needs. Additionally, the Foundation has legal advice in situations of inconveniences in the provision of services as well as in the recognition of economic benefits such disability pensions.

Every day the Foundation is strengthened by the work carried out, generating positive impacts in the community and promoting solidarity among patients. We are grateful to all the volunteers who participate in the development of our work.

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Bringing Together Patient Representatives at the ASIF Council Meeting

Perhaps the most important outcome from the meeting was the sharing of experiences and the strengthening of new and existing relationships.

Running a patient organisation is incredibly rewarding but also hugely challenging. Knowing that the challenges faced are not unique and hearing how others have overcome them is incredibly powerful.

Delegates heard a presentation on emerging therapies and research in axSpA and participated in workshops exploring what research is needed to support the work of patient organisations. They participated in a panel discussion on improving axSpA knowledge among healthcare professionals and heard about how they can help strengthen relationships between patient organisations and professional rheumatology bodies.

One of the most popular sessions focused on psychosocial support – where the gaps are, how patient organisations can support their members and best practices to overcome barriers. Throughout the meeting, delegates were invited to present a poster about their organisation, facilitating the sharing of experiences and an increased awareness about how different organisations work around the world.

“Learnings from the speakers, the moderators, the workshop leaders and the new information and knowledge acquired from other participants”, this was one of the responses to the question ‘what did you like best about the ASIF Council Meeting?’.

Much of what was discussed at the meeting will go on to inform ASIF’s work going forward. A full report on the ASIF Council Meeting, which was held in Colombia in October will be available early in the new year.

View our Members’ Posters

Thank you

A message from Zhivko Yankov, President of ASIF

“I would like to acknowledge two individuals who have played an essential role in ASIF’s journey: Raj Mahapatra and Maranda van Dam. Both have served ASIF with remarkable dedication and passion over the years, and their work has had a profound and lasting impact on the organisation.

“Raj, your wisdom and strategic insights have been invaluable. From guiding critical decisions to helping shape the future of ASIF, your leadership has steered us through both challenging and prosperous times. Your thoughtful contributions have left an indelible mark on this organisation, and ASIF is stronger because of your efforts.

“Maranda, your tireless work and commitment to ASIF’s mission have been nothing short of inspiring. You have been a driving force behind many of our key initiatives, and your passion for supporting people living with Axial Spondyloarthritis has brought us closer to our goals. Your dedication has made a tangible difference in the lives of those we serve.

“ASIF is what it is today because of the hard work, dedication, and vision that both of you brought to the table. We will forever be grateful for the time and energy you’ve invested in helping us grow and thrive. “On behalf of everyone at ASIF, thank you both for your service. While we will miss your presence on the board, we know that your contributions will continue to echo throughout the organisation for years to come. We wish you both all the best in your future endeavours and hope that our paths will cross again soon.”