Patients take universal health coverage into their own hands

150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world.

Patients’ groups, academics and health organisations will meet at the 7th Global Patients Congress, from 9-11 April, to share innovative best practice, research and to highlight specific examples of how to improve healthcare access across countries and contexts. Topics will include new approaches to community mobilisation, health professional-led innovation in disaster and conflict areas, strengthening health systems and patient involvement in drug development.

The adoption of the UN Sustainable Development Goals has pushed universal health coverage (UHC) – where all people receive the health services they need, without suffering financial hardship when paying for them – to the front of the health agenda. Every UN member state has agreed to ‘ensure healthy lives and promote well-being for all’ by 2030, which gives patients the timescale and the means to hold them to account. Many patients are taking the challenge of universal health coverage into their own hands by sharing new ideas which already improve healthcare in their communities.

Innovative approaches are improving patient experience, choice of treatment options and outcomes across the world. New examples are constantly surfacing: virtual patient communities now provide greater access to information and peer support, crowd-funding helps patients pay for the research they want to see, and social media helps to normalise different conditions and reduce stigma. These developments are changing the face of healthcare. Patients are more informed, more involved, and more engaged in working collaboratively with others to change health systems for good.

Jolanta Bilińska, Chair of the International Alliance of Patients’ Organizations, said:

‘History will judge governments against whether universal health coverage is achieved by 2030, but the responsibility lies with everyone involved in healthcare, including patients. Patients have an ethical and moral right to be involved in all decisions about their care, and bring new ideas which can’t be replicated by any other group. Patients are already changing healthcare with innovative approaches. Decision-makers at every level must do everything possible to listen to and embrace the patient voice.’

The International Alliance of Patients’ Organizations will host the 7th Global Patients Congress in London, 9-11 April. Patients and patients’ groups will share further examples of patient-led innovation in healthcare throughout the event. Find out more at www.iapo.org.uk/GPC2016

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We are very proud to share that LupusGPT has now been published in The Lancet Rheumatology, one of the world’s leading medical journals in rheumatology.

For us, this is not only about a publication. It is about what LupusGPT stands for.

LupusGPT is free. It is patient-led. And it was built to help people living with lupus find reliable, accessible information in almost any language.

It began with a simple but important question: what could become possible if patients, clinicians, and digital experts truly worked together from the start?

That question was first opened up in a fishbowl discussion at the European Lupus Meeting 2024 on how the lupus community could get the best, but not the worst, out of AI. From there, LupusGPT was shaped through the care, intelligence, and effort of many people: volunteers, patient testers, clinicians testing across languages, people who gave feedback, and people already helping us share it with patients in clinics, organisations, and communities.

This publication matters because it shows that patient-led innovation belongs in the scientific world too. It shows that when patient voice is not added at the end, but built in from the start, something real can grow.

A heartfelt thank you to all authors: Zoe Karakikla-Mitsakou, Alain Cornet, Jeanette Andersen, Sarah Dyball, Cristiana Sieiro Santos, Daniel Guimarães de Oliveira, and Laurent Arnaud. Special thanks also to Daniel Guimarães de Oliveira for the thought, care, and belief he brought to this work, and to Professor Laurent Arnaud for his outstanding support, steadiness, and guidance.

And above all, thank you to everyone in the Lupus Europe community who keeps showing us why this matters.

LupusGPT. Free. Multilingual. Patient-led. And now part of the scientific record.

doi.org/10.1016/S2665-9913(25)00370-4

Read it for free now! You only need to register (registration is completely free and takes 1')
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We are very proud to

🚨 Today is #WORDDAY2026! Which stands for WOrld Young Rheumatic Disease Day.

🌍 Through this global event, we can spread the word that children and young people get rheumatic diseases like lupus, too.

‼️ It is estimated that around 15-20% of #lupus patients are children, although it is rare that a child develops lupus before 5 years of age.

As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control.

🔴 On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids.

😰 The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information.

👉 Remember: it is impossible to learn everything about #lupus overnight! Your child's doctor is the best source of information.

Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management.

📷 Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness.

🐺 Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job!

Turn to your lupus association for support.

🤗 There are many organisations across Europe that can help you and your child cope with the disease.

More information on #SLE in children at #Lupus100: f.mtr.cool/oklkpqamyu

For more information on WORD Day, you can visit World Young Rheumatic Diseases Day - WORD Day
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🔴 Tomorrow is #WORDDAY2026!

🦋 And we will be sharing tips and information on how #lupus can affect children.

Help us raise awareness, which is key for an early diagnosis & a quick referral to a specialised paediatric rheumatologist.

Share our posts and follow the World Young Rheumatic Diseases Day - WORD Day campaign.

More information on lupus in children at #Lupus100 (19 languages):

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🔴 Tomorrow is #WO

Watch this Lupus Europe Webinar on the European Lupus Meeting (ELM) 2026, As Viewed by Lupus Europe's PAN Members & Volunteers!

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