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ASIF news

May 31, 2024

Biosimilar Medicines

AxSpA patients were recently represented at a biosimilar medicines patient leader workshop organised by Medicines for Europe. Rene Anour, Chair of the Biosimilar Medicines Working group at the European Medicines Agency (EMA) and Sarah Ikenberry from the US Food and Drug Administration (FDA) (pictured left) heard from ASIF’s Jo Lowe as she shared her thoughts … Continue reading "Biosimila...

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May 31, 2024

World AS Day

  World AS Day was a great success with many of our members utilising our World AS Day social media assets. Some translated and personalised them to connect with their local audiences. Others used their own content alongside #WorldASDay2024. It was great to see so many individuals posting about their experiences to raise awareness. There … Continue reading "World AS Day"...

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May 31, 2024

ASIF Council Meeting 2024: Colombia

  ASIF members from around the world will gather in Columbia in October for our Council Meeting. We have registrations from all continents and expect this to be the biggest ever meeting of organisations supporting people living with axSpA. All participating organisations will have the opportunity to present a poster and there will be plenty … Continue reading "ASIF Council Meeting 202...

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May 30, 2024

Spotlight on IMAS

  Our celebratory ‘Spotlight on IMAS’ reception in Vienna is only days away. The event, the evening before the EULAR congress starts, will bring together our members, industry, healthcare professionals and key stakeholders.  ASIF’s new ownership of IMAS is an important milestone and will help to inform ASIF’s future work.  IMAS continues to help us understand how … Continue reading...

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Mar 7, 2024

IMAS in 2024

  Read the report on our new IMAS webpages, where you can discover the results from survey participants in 27 countries, shining a light on the burden of living with axSpA.  The report includes calls to action for healthcare professionals and policymakers, which target better public and professional understanding of axSpA, so that people with … Continue reading "IMAS in 2024"...

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Dec 10, 2023

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. On 15 November, Mike Mandelbaum and Jo Davies … Continue reading...

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May 31, 2024

Biosimilar Medicines

AxSpA patients were recently represented at a biosimilar medicines patient leader workshop organised by Medicines for Europe. Rene Anour, Chair of the Biosimilar Medicines Working group at the European Medicines Agency (EMA) and Sarah Ikenberry from the US Food and Drug Administration (FDA) (pictured left) heard from ASIF’s Jo Lowe as she shared her thoughts … Continue reading "Biosimila...

read more

May 31, 2024

World AS Day

  World AS Day was a great success with many of our members utilising our World AS Day social media assets. Some translated and personalised them to connect with their local audiences. Others used their own content alongside #WorldASDay2024. It was great to see so many individuals posting about their experiences to raise awareness. There … Continue reading "World AS Day"...

read more

May 31, 2024

ASIF Council Meeting 2024: Colombia

  ASIF members from around the world will gather in Columbia in October for our Council Meeting. We have registrations from all continents and expect this to be the biggest ever meeting of organisations supporting people living with axSpA. All participating organisations will have the opportunity to present a poster and there will be plenty … Continue reading "ASIF Council Meeting 202...

read more

May 30, 2024

Spotlight on IMAS

  Our celebratory ‘Spotlight on IMAS’ reception in Vienna is only days away. The event, the evening before the EULAR congress starts, will bring together our members, industry, healthcare professionals and key stakeholders.  ASIF’s new ownership of IMAS is an important milestone and will help to inform ASIF’s future work.  IMAS continues to help us understand how … Continue reading...

read more

Mar 7, 2024

IMAS in 2024

  Read the report on our new IMAS webpages, where you can discover the results from survey participants in 27 countries, shining a light on the burden of living with axSpA.  The report includes calls to action for healthcare professionals and policymakers, which target better public and professional understanding of axSpA, so that people with … Continue reading "IMAS in 2024"...

read more

Dec 10, 2023

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. On 15 November, Mike Mandelbaum and Jo Davies … Continue reading...

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Dec 10, 2023

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 … Continue reading "A...

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Dec 10, 2023

World AS Day 2024 Social Media Grants

ASIF is delighted to offer our members the opportunity to apply for a £500 World AS Day (WASD) Social Media Grant. The grant is to be used exclusively for boosting WASD social media posts and ads.   In previous years ASIF has boosted WASD posts to countries where our members operate, however the posts have linked … Continue reading "World AS Day 2024 Social Media Grants"...

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Dec 10, 2023

World AS Day 2024

Theme: Signs and Symptoms Date: 4 May The World AS Day social media assets have been created, the animations are ready, the webpage is live, and the Toolkit is ready for download! It was great to see so many of our members and industry partners at our World AS Day Webinar on 6 February. If … Continue reading "World AS Day 2024"...

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Dec 9, 2023

Patient Resources

  Did you know we have a set of three new infographics, which help to support people living with axSpA?  The resources aim to inform people how disease activity is typically measured; support them in building a partnership with their doctor; and assist them in focussing on their personal and lifestyle goals. The first of … Continue reading "Patient Resources"...

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Dec 8, 2023

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, … Continue reading...

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Nov 26, 2023

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 completes 22 years of fulfilling its mission: to educate … Continue r...

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Sep 12, 2023

Building a Partnership with Your Doctor

Building a partnership with a doctor can help people get the most out of their axSpA treatment. A new ASIF infographic highlights how people living with axSpA can help to guide decisions about their healthcare and what that can look like in practice. This is part of a series of three infographics to support people … Continue reading "Building a Partnership with Your Doct...

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Sep 11, 2023

The psychological burden of axSpA and the support patient organisations’ can offer to their members

It is becoming clearer that depression and anxiety are prominent among people living with axSpA The European Map of Axial Spondyloarthritis (EMAS) and the International Map of Axial Spondyloarthritis (IMAS) describe how people living with axSpA experience their disease physically, psychologically and socially. Results show long diagnostic delays and a substantial physical and psychological burden, …...

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Sep 11, 2023

WASD 2023 Read our Report

  Awareness raised with 48 million people!   Read more      ...

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Sep 11, 2023

Read our report on EULAR 2023

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Sep 11, 2023

New awareness and advocacy tools!

Our new Delay to Diagnosis materials will help raise awareness of the key signs and symptoms of axSpA; and the devastating effects of the diagnostic delay. Three powerful short films, translated into nine languages, and an infographic on the diagnostic delay, including the physical, psychological and socio-economic impacts, will support our members in their advocacy … Continue reading...

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Jun 8, 2023

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 … Continue reading "EULAR 2023"...

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Jun 8, 2023

New Infographic: Preparing for Medical Appointments

The first in a set of infographics, aimed at preparing and supporting people for appointments with their doctors, is available on our website.  It explains how disease activity is measured, particularly through the BASDAI and ASDAS, as well as other assessments that may be done.  Future infographics will focus on what types of treatment targets … Continue reading...

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Jun 8, 2023

Global IMAS Report to be launched in January

Next month ASIF will launch its International Map of Axial Spondyloarthritis (IMAS) report, The burden of axial spondyloarthritis: a global patient perspective. The report demonstrates the challenges of living with axSpA – from getting a timely diagnosis to the health and socioeconomic impacts.  A core aim of IMAS is to incorporate the patient perspective and … Continue reading...

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Jun 8, 2023

Coming soon: New materials to help reduce diagnostic delay

We are finalising our new Delay to Diagnosis materials, which help raise awareness of the key signs and symptoms of axSpA; and the devastating effects of the diagnostic delay.  As well as three short films, translated into nine languages, ASIF will provide an infographic on the diagnostic delay, including the physical, psychological and socio-economic impacts.  … Continue rea...

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Jun 8, 2023

Why I’m an ASIF Trustee

Cassie Shafer is the CEO of the Spondylitis Association of America (SAA) and tells us why she joined our Board of Trustees. “As a long-time non-profit executive, I’ve had the honour to work with many different groups of people that are often underserved.  Serving these people, in whatever way I can, has been both fulfilling and … Continue reading "Why I’m an ASIF Truste...

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Jun 8, 2023

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 … Continue reading "Memb...

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Jun 8, 2023

World AS Day reached more than 48 million

The World AS Day awareness campaign reached more than 48 million people around the world. This is a significant jump from previous years. And that is just half the story – our members, industry partners, healthcare practitioners and people living with axSpA posted, tweeted and shared content through their own channels resulting in the awareness … Continue reading "Wo...

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Mar 13, 2023

New Member Resources Webpages

ASIF are delighted that our new resources webpages are now live. The materials can be used by our members, and by patients and caregivers.  The improved site will also signpost healthcare professionals to relevant axSpA information and tools. Our mission is ‘to advocate globally to improve the lives of people affected by axial Spondyloarthritis and … Continue reading "New M...

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Mar 10, 2023

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 … Continue reading "Member W...

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Mar 7, 2023

Introducing Mike

ASIF’s new Executive Director “I joined ASIF a few weeks ago, excited to embark on a voyage of discovery into the world of axSpA and rheumatology. While I have not yet sailed the high seas of axSpA, I have been inspired by the view from the shallow waters and am glad to share my early thoughts … Continue reading "Introducing Mike"...

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Mar 6, 2023

Why I’m an ASIF Trustee

Ruta Grigiene from Lithuania tells us why she joined our Board of Trustees “I became a member of ASIF’s board of trustees in 2014, quite unexpectedly to myself. When I was diagnosed just half a year prior, I almost immediately got involved with the Lithuanian AS patients’ association. The association delegated me to participate in the ASIF conference, … Continue reading...

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Feb 1, 2023

New Executive Director for ASIF

We are delighted to welcome Mike Mandelbaum to the ASIF team as our first Executive Director. Mike has worked in the NGO sector for over 30 years, focusing on health and international development. He has managed palliative care services in the UK and been Chief Executive of a palliative care education charity working in Eastern … Continue reading "New Executive Director for ASIF...

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