ERN ReCONNET questionnaire

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LUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire linked below to reach as many patients as possible.

The link below goes to the generic survey in English. The LUPUS EUROPE secretariat (secretariat@lupus-europe.org) also has links to the survey in Portuguese, Dutch, Romanian, Italian, German, Slovenian and should soon receive French.

Therapeutic Patient Education needs: Questionnaire for patients

We are asking you to please relay the link through your social media channels and encourage your members to participate.

Eular 2018

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Today is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals.

Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from around the world.”

Here are some pictures of the LUPUS EUROPE stand at Eular.

 

EPF Roadmap for Universal Health Coverage for all

On December 6th Katharine Wheeler participated in the closing conference for EPF’s campaign on Access to Healthcare for All. At the conference EPF presented their Roadmap for Universal Health Coverage for all. Katharine was invited to speak as a patient organisation representative and stressed the importance of leaving no-one behind if we want to achieve the UN sustainable development goals by 2030. She also stressed how important it is that all stakeholders, including patients, are involved across the board and that involvement is not limited to token gestures when it comes to designing new policies and looking at ways to reduce waste while improving the standard of care. This is all the more true when it comes to complex, chronic and rare diseases where care can be fragmented at best in any country, or almost non-existent in others.

Below you will find EPF’s press release, issued on 6th December.

TAKING ACTION: EPF’S ROADMAP TO ACHIEVE
UNIVERSAL HEALTH COVERAGE FOR ALL BY 2030

BRUSSELS, 6 December 2017 – EPF’s Campaign on Access to Healthcare for All calling for Universal Health Coverage by 2030 is coming to an end. During its closing Conference held today at the European Parliament, EPF presented its Roadmap and called for political change to ensure the rights of all patients are respected, to fight the health inequalities that persist across the EU, and to make health a priority in all policies at national and EU levels.

A tool for political guidance and a call for a long-term vision

Patients and citizens still face many unmet needs and unequal access to healthcare in all EU Member States. The output of EPF’s one-year campaign, EPF’s Roadmap to achieving universal health coverage for all by 2030 aims to tackle these in two main ways: “With this Roadmap we want to provide political guidance and recommendations to policy makers and politicians and to encourage them to have a longer-term vision and to reflect on what kind of society we want for the patient community and the wider public by 2030.” said Nicola Bedlington, EPF Secretary General.

What is EPF advocating for?

This Roadmap is intended mainly for EU and Member State decision and policy-makers and urges them to:

  • Provide equitable access to high-quality care to all patients, regardless of which country the live in or their country of origin;
  • Commit to invest sustainably in healthcare based on outcomes and added value;
  • Ensure the delivery of healthcare products and services that are affordable for all;
  • Promote better coordination of care and implement access to a holistic range of health and related services, ensuring that the package of services covered by the healthcare system is tailored to the needs of patients;
  • End the discrimination and stigma that patients face and make sure that no population is excluded.

UN SDGs as a compass, European health collaboration as a means

The Roadmap emphasises the importance and need to establish a transparent, inclusive and collaborative working process for the implementation of UHC and the UN SDGs.

“I we don’t get it right on the SDG on Health, then there is a risk that the other SDGs will fail. By the same token, if we don’t get it right in health collaboration post 2020, then some other big aspirations for the EU in terms of economics and growth will also fail,” added Nicola Bedlington.

This Roadmap echoes numerous initiatives taken by EPF to increase access for patients and citizens across Europe. On Monday 4th December, the EPF roundtable on cross-border healthcare provided an updated assessment of the current state of implementation of the directive from the perspective of patients, pointing out the gaps in access but also in the quality and safety of the care received across Europe.

Please find here EPF’s Roadmap entitled ‘Taking Action – A Roadmap to Achieving Universal Health Coverage for All by 2030’.

A factsheet giving a snapshot of this Roadmap has also been developed.

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LUPUS EUROPE needs YOU!

If you are a member of one of LUPUS EUROPE’s member organisations and are interested in getting more involved as a patient advocate – spreading awareness, attending events, working on specific projects… we would love to hear from you. Even if you can only offer a little of your time, your contribution could make a huge difference!
If you have some time and skills to spare, please get in touch with the Lupus Europe secretariat at secretariat@lupus-europe.org
Augusta & Francesca

Augusta & Francesca

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Before becoming a trustee, Katharine had already volunteered to attend key events.

Patient Advocates (starring Nuria)

We’re delighted to share a really great video interview of three patient advocates telling us more about why they get involved. The video was made during the Eyeforpharma event in Barcelona  and stars our very own Nuria! To view the video please click here.