Category: Conferences and events

Galapagos Patient Partnership Day

On 15 November, Mike Mandelbaum and Jo Davies from ASIF attended Galapagos’ first ever Patient Partnership Day at their Head Office in Mechelen, Belgium. The one-day event was attended by representatives from around 30 patient organisations mostly representing RMDs, and many Galapagos employees from around the world.

Galapagos Patient Partnership Day
Jo Davies from ASIF and Antonella Celano from APMARR

On 15 November, Mike Mandelbaum and Jo Davies from ASIF attended Galapagos’ first ever Patient Partnership Day at their Head Office in Mechelen, Belgium. The one-day event was attended by representatives from around 30 patient organisations mostly representing RMDs, and many Galapagos employees from around the world.

The aim of the day was to share ideas about what good patient engagement (PE) is.

Patient engagement is maturing. Patients are rightly becoming more important in research and with policy makers and pharmaceutical companies.

There were sessions covering best practice, the importance of shared decision-making in clinical trial settings. There was also an opportunity to take part in workshops in patient engagement and communications and health literacy. The day ended with a poster session and dinner. ASIF members were also present, including Antonella Celano from APMARR and Andri Phoka from Cyplar, EULAR PARE, Agora and an ASIF Trustee.

ASIF Council Meeting 2024

ASIF Members from around the world will gather in Columbia in October for our annual Council Meeting.

IMAS will feature as a central theme throughout the meeting. Presentations, discussions and workshops will include raising awareness among healthcare professionals, emerging therapies and research, and how our members can use IMAS to facilitate their work. One of the most anticipated sessions will be an opportunity for our members to present their organisations, campaigns and work. Importantly, delegates will have time to network, share ideas, build new relationships and create opportunities for collaboration.

Invitations have been sent and we look forward to assisting delegates with their attendance. Please contact Jo Davies (office@asif.info) with questions about the Council Meeting.

 

EULAR PARE 2023 Conference

Mike Mandelbaum and Jo Davies from ASIF attended the EULAR PARE 2023 Conference in Brussels on 16 and 17 November.  This year’s conference was mostly about implementing the EULAR Manifesto Campaign, an advocacy campaign outlining RMD-related policy asks. The manifesto focuses on influencing three policy areas:

Quality of care: improving RMD prevention, early diagnosis, treatment, and rehabilitation interventions.

Mike presenting ASIF poster
Mike presenting the ASIF poster

Social Policy: mitigating the burden of RMDs on health-related quality of life, education, and employment.

Research and innovation: developing better RMD prevention and treatment strategies.

You can find out more about the EULAR Mainfesto at www.eular.org/eular-manifesto. 

The campaign is largely focussed right now on influencing European Parliament. However, the manifesto will have resonance with all of us and it is a document that could be adapted to suit other countries.

Everyone who attended EULAR PARE also took part in the Best Practice Fair. Forty posters were presented; Mike presented an ASIF poster on IMAS (pictured above). It was wonderful to see the work that other organisations are doing. There were a number of ASIF members at the event.

AGORA Conference

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. 

Participants at AGORA Conference
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.

Conferences and Events

 

Dates for your diary from around the world

If you would like your event listed, please email: communicationsmanager@asif.info

2024

MARCH

01-02     Rheumatology Update Europe, Amsterdam, The Netherlands and Virtual

1-4          Emirates Society for Rheumatology Annual Meeting in conjunction with 3rd Gulf Cooperation Council Rheumatology Conference, Dubai

13             ASIF: IMAS Report Webinar

 

APRIL

10-13        PANLAR, Columbia

24-26       The British Society for Rheumatology Annual Conference, Liverpool, UK and Virtual

 

JUNE

11                ASIF: Spotlight on IMAS, Austria

12-15         EULAR, Austria

27-29        World Psoriasis & Psoriatic Arthritis (IFPA) Conference, Sweden

 

AUGUST

21-25      APLAR, Singapore

SEPTEMBER

5-7          International Congress on Spondyloarthritides, Belgium

OCTOBER

16-19     ASIF Council Meeting, Columbia

EULAR 2023

ASIF booth at EULAR 2023 in Milan, Italy

Rheumatologists from Aruba to Argentina, Pakistan to Panama and so many countries in between spoke to the ASIF team about our work and the impact Patient Organisations make to the lives of people living with axSpA.

During EULAR, some of the world’s leading researchers and rheumatologists discussed the importance of patient centric research and care. We explored our priorities with our industry partners and how, by strengthening our relationships, we can develop projects that our members can use to change lives.

We will share a report on EULAR soon. 

AiArthritis’ Go With Us to EULAR 2023 Live Debrief

Saturday, Jun 17, 2023 on Facebook at 12:00 pm EST / 9:00 am PST (USA).

Click here to attend the debrief live or find out how to watch it on demand.

Member Webinar

The Psychological Impact of axSpA and the Role of Patient Organisations

Date: 27 June

Time: 14:00-15:00 BST

Nadia Malliou will address the emotional and psychological impact of axSpA and how patient organisations can support their communities. Following Nadia’s presentation there will be an opportunity for discussion and to share ideas.

About Nadia…

“I am a professional psychologist, with experience in various professional contexts in mental health services and administration. I have specialised through further training with the European Pain Federation EFIC in chronic pain management and for the last few years I have been working with the Pain Unit at the Thessaloniki General Hospital AHEPA to offer help and support to as many patients with rheumatic diseases as I can.”

“My experience both in management positions and my training and involvement with teams has helped me to offer, and continue to wish to offer, as much as I can to the Hellenic League Against Rheumatism EL.E.AN.A. For the last 5 years I have been intensively involved in chronic pain management, both academically and clinically, through projects and collaborations of the association, such as the collaboration with the Medical Physics and Digital Innovation Laboratory of the Aristotle University of Thessaloniki to create pain management applications.”

“I have represented my country in the EULAR PARE and EULAR conferences and in the congress of the EUROPEAN PAIN FEDERATION EFIC. At the first congress of the World Patients Alliance, I had the pleasure of meeting many patients from around the world, to associate with health professionals and to gain useful experience and knowledge, always aiming to apply them in Greece.”

Watch our previous Webinars.

Member Webinar

Community/Direct Fundraising

 

 

Tuesday 21 March at 18:00-19:00 GMT

Fundraising, specifically direct or sometimes known as community fundraising, is the topic of our March Webinar (postponed from February).

Liz Marshall will speak about how NASS uses Walk Your AS Off to raise funds. Sean Ewart will discuss the different types of community fundraising that the SAA implements.

 

Please email us at admin@asif.info to secure your space (Members only).

Watch our previous Webinars.