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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🚨 New publication alert: EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement- 2025 update.

‼️ According to Lupus Europe's 2024 Swiss knife survey:

1️⃣ Kidney involvement remains one of the most worrying and impactful lupus manifestations for many people in Europe.
2️⃣ Kidney problems are among the manifestations causing the greatest long-term concern.
3️⃣ Only a small minority of patients report long-term stability without flares.
4️⃣ Patients want clearer goals, better communication, and care that looks beyond lab values alone.

That is why the 2025 update of the EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement is such an important step forward.

✅ These updated recommendations reinforce several key messages that matter to patients:
- Early and regular monitoring of kidney involvement.
- Timely kidney biopsy when needed.
- Clear treatment targets to preserve kidney function.
- A strong focus on combination therapies when appropriate.
- Long-term kidney protection, not only short-term control.

🌟 We are especially proud that our Chair, Jeanette Andersen, was part of the international task force that developed these recommendations, ensuring that the patient perspective was present at the table.

You can read the EULAR Recommendations here: ard.eular.org/article/S0003-4967(25)04412-7/fulltext

And the Swiss Knife Survey here: www.sciencedirect.com/science/article/pii/S1568997225000989
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