From April 10th-11th EPF held its annual AGM. Katharine Wheeler attended on behalf of LUPUS EUROPE.

Naturally, in the year of EPF’s campaign on Access to Healthcare, there was a strong focus on the #Access2030 campaign and putting healthcare firmly back on every politician’s agenda.

A noteworthy result of EPF’s survey on Access to healthcare is the fact that 60% of respondents experience financial hardship as a result of accessing healthcare. A result that won’t be a surprise to anyone affected by a chronic condition.

“I refuse to be considered a second-class citizen or a cost, my care is not a cost, it’s an investment.” – Marco Greco, EPF President


For more on the #Access2030 campaign, please click here.

“2017 is a pivotal year – now that we have seats at the table, need to ensure enough patient advocates!” – Marco Greco, EPF president

Seven patient groups applied for EPF membership. BAG Selbsthilfe (German patient self-help group umbrella), the European Congenital Heart Disease Organisation, the Swedish National coalition (HSO Handikappförbunden, and the NCDP – Greek National confederation of Disabled people (not the official English name) were approved as full members. Due to a late application, the Spanish platform for patient organisations (Platforma de Organizaciones de Pacientes) was granted provisional membership.

AGORA (platform representing patient organizations of people with Rheumatic and Musculoskeletal Diseases (RMDs) in Southern Europe) and LuCE – Lung cancer Europe were approved as associate members.

Eight candidates put forward their applications as board members. Four positions were available. Marco Greco, Radu Ganescu and Stanimar Hasardjiev were re-elected while Hilkka Härkkäinen was newly elected. Robert Johnstone, a long-standing board member and well-known to many stood down. He was thanked warmly by the board and members for his years of service in patient advocacy. As someone whose comittment and good humour never wavered, he will no doubt be sorely missed.

A record number of Patient Organisations attended the AGM (the highest number yet), and many fruitful discussions were had on subjects such as Access, the complexity of research and clinical trials, the interest of data collection and volunteer recruitment – to name but a few. Work groups also discussed Access, Empowerment, Sustainable Patient Organisations and Governance.

“If each patient is a drop of water, together, we are the sea” – Marco Greco, EPF President

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4 hours ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻Deltag i undersøgelsen.

🔊Del med dit fællesskab.

👨🏼⚕Hvis du er sundhedsprofessionel og behandler patienter med lupus i Europa, ville vi sætte stor pris på, at du informerer dine patienter.

🙏 Help us and Sle-Lupus- info achieve more answers to ensure that the Danish population is represented in the results

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♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻Dalyvaukite apklausoje.

🔊Dalinkitės savo bendruomenėje

👨🏼⚕Jeigu esate sveikatos priežiūros specialistas ir gydote vilklige sergančius pacientus Europoje, būtume labai dėkingi, jei informuotumėte savo pacientus.

🙏 Help us and Lupus Lt achieve more answers to ensure that the Lithuanian population is represented in the results

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3 days ago

✍🏻Doe mee aan de enquête.

🔊Deel met uw gemeenschap.

👨🏼‍⚕Bent u een gezondheidsmedewerker en behandelt u lupuspatiënten in Europa, dan waarderen we het zeer als u uw patiënten deze informatie verstrekt.

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✍🏻Doe mee aan de enquête.

🔊Deel met uw gemeenschap.

👨🏼‍⚕Bent u een gezondheidsmedewerker en behandelt u lupuspatiënten in Europa, dan waarderen we het zeer als u uw patiënten deze informatie verstrekt.


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3 days ago

💚 Habt ihr 10 Minuten?

Seit 2020 hat LUPUS EUROPE umfassende Umfragen zum Thema "Leben mit Lupus" durchgeführt, die bereits viele positive Auswirkungen hatte.

⏰ Jetzt ist es an der Zeit für eine neue Umfrage, um unser Verständnis davon zu vertiefen, wie es ist, im Jahr 2024 mit Lupus zu leben. Sie wird eine große Anzahl von Bereichen abdecken, einschließlich des Seins einer jungen Mutter, eines Mannes, eines Seniors mit Lupus oder Fragen rund um die Arzt-Patient-Beziehung, aktuelle unerfüllte Bedürfnisse der Patienten und Patientinnen, Medikamentenpräferenzen und weitere!

👉 Die neue Umfrage startet am 1. April 2024, und wir brauchen Ihre Unterstützung! Ihre Stimme ist entscheidend, um ein breites Spektrum von Themen abzudecken.

Je mehr Teilnehmende, desto größer ist unser Einfluss. Bitte nehmt daher an der Umfrage teil unter www.surveylegend.com/s/5h8u.

Die Ergebnisse werden im Sommer veröffentlicht und über die nationalen Mitglieder verbreitet.

Danke für eure Unterstützung! 🥰
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LUPUS EUROPE Uniting people with Lupus throughout Europe