Sjögren Europe

27/08/2026

Join the EPF Barometer Open Webinar, 15 September 2026

The European Patients' Forum is hosting an open webinar to present findings from the EPF Barometer on patient organisations' involvement in national-level health policy.

Date: Tuesday 15 September 2026
Time: 14:00–15:00 CEST
Format: Online via Zoom, free registration

Sjögren Europe encourages our member associations, healthcare professionals, and anyone interested in strengthening patient voice in health policy to join.

Register here: https://us06web.zoom.us/webinar/register/WN_K7BdP02lRO-KEftbEXpg9A #/registration

EPF Barometer on the involvement of patient organisations in health policy at national level Zoom on patient involvement in regulatory processes and health technology assessment (HTA) EPF Barometer highlights: Yann Heyer, Policy Officer, European Patients' Forum Moderation by Claudia Louati, Head of...

24/08/2026

New EPF Barometer maps patient involvement in health policy across Europe

The European Patients' Forum (EPF) has published the first-of-its-kind EPF Barometer, mapping how patient organisations are involved in national health policymaking across 23 European countries, based on input from 27 national coalitions.

Key findings:
- Northern and North-Western Europe shows the strongest, most structured involvement mechanisms.
- Only 4 countries have a formal legal definition of patient organisations.
- More than a third of countries report no formal framework for patient involvement at all.
- Transparency and representation criteria remain unclear or inconsistent in many countries.

Meaningful patient involvement isn't optional — it strengthens transparency, accountability and the quality of health policy. Sjögren Europe supports EPF's call for stronger, more transparent, and sustainably funded involvement structures across the continent.

Read the full report: https://www.eu-patient.eu/epf-barometer/

The EPF Barometer on the Involvement of Patient Organisations in Health Policy at National Level is a first-of-its-kind initiative developed by the European Patients’ Forum (EPF) to assess how patient organisations are involved in health policymaking across Europe.

04/08/2026

📢 EULAR Edgar Stene Prize Essay Competition 2027

Topic: "80 years of progress. What do rheumatology advances mean for people living with RMDs today?"

We're inviting anyone 18+ living with an RMD (including Sjögren) to write their own essay—max 2 pages, in Word format, in English or your national language.

🗓️ Deadline: Friday, 12 December 2026
📧 Submit to: [email protected]

🏆 Prizes up to €1,000, plus a trip to the EULAR Congress 2027 in Berlin, where the winner will be announced.

More information: https://www.eular.org/pare-stene-prize
Share your story!

29/07/2026

Let’s continue to shine a light on the lesser-known realities of Sjögren’s.
Sjögren’s is far more than dry eyes and dry mouth.

It can increase the risk of cardiovascular disease, affect mental health, and lead to kidney complications.

These manifestations are too often overlooked, delaying diagnosis, treatment, and support.

The more we talk about them, the more patients will be heard.

💙 Together, let’s make the invisible visible.

AutoimmuneDisease PatientVoices SjogrenEurope

23/07/2026

YOU. ARE. NOT. ALONE. 💙

The Sjögren Europe team wishes you all a meaningful World Sjögren’s Day ⭐️

We know that too many of you still feel unheard, misunderstood or dismissed.

Today, we raise our voices.

Tomorrow, and every day after, we’ll continue to stand beside you, advocate for you, and fight to ensure every patient is heard.

Join us for today by registering for our webinar on ‘Awareness and unmet needs from the clinician and patient perspective’ !

👉 Register here: https://urls.fr/H2WM08

Date: 23 July 2026
Time: 17:00 CET

TOGETHER WE ARE STRONGER

21/07/2026

Nobody listens. 💙

Not when gastrointestinal symptoms are dismissed.
Not when intimacy becomes painful and sexual dysfunction is never talked about.
Not when people believe Sjögren’s only affects women.
Living with Sjögren’s can affect the digestive system, intimate relationships, mental well-being, and people of every gender.

These realities are too often overlooked, leaving patients feeling misunderstood and alone.

This World Sjögren’s Day, we’re challenging misconceptions and giving a voice to the experiences that deserve to be heard.

💙 It’s time to listen.
💙 It’s time to believe.
💙 It’s time to see the whole picture.

Don’t forget to resgister for our World Sjögren’s Day webinar : https://urls.fr/H2WM08

Because shouldn’t define life with Sjögren’s.

21/07/2026

D-2 📣

Don’t forget to register for the World Sjögren’s Day webinar on "Awareness and unmet needs from clinician and patient perspective"

Date: 23 July 2026
Time: 17:00 CET
👉 Register here: https://urls.fr/H2WM08

📢 World Sjögren’s Day is almost here. It’s time to be listened to.

Join us on 23 July 2026 at 17:00 CET for a special webinar exploring awareness and unmet needs in Sjögren’s disease, from both the clinician’s and the patient’s perspective.

We are honoured to welcome Dr Pilar Brito-Zerón, Specialist in Internal Medicine and internationally recognised expert in Sjögren’s disease and autoimmune disorders, as our keynote speaker.

🎙 Topic: Awareness and unmet needs from clinician and patient perspective
Date: 23 July 2026
Time: 17:00 CET

👉 Register here: https://urls.fr/H2WM08

Let’s make sure the voices of people living with Sjögren’s are heard.

💙 Because should never be the reality for patients. EULAR Health Professionals in Rheumatology ERN RECONNET EULAR EULAR Young PARE

17/07/2026

Nobody listens. But we do.

Fatigue that affects your work ability. Dysautonomia that turns everyday tasks into a challenge. Raynaud’s that makes even simple moments painful.

These are just some of the many ways Sjögren’s disease impacts people’s lives. Yet too often, these symptoms are dismissed, misunderstood or ignored.

On this World Sjögren’s Day, let’s change that.

Listen. Believe. Support.

Because no one living with Sjögren’s should have to fight to be heard.

Don’t forget to participate at our very important webinar the 23rd, July 2026 at 17.00 CET 💻 : https://urls.fr/H2WM08

💙 Learn more and help raise awareness !
EULAR EULAR Health Professionals in Rheumatology EULAR Young PARE ERN RECONNET

15/07/2026

📢 World Sjögren’s Day is almost here. It’s time to be listened to.

Join us on 23 July 2026 at 17:00 CET for a special webinar exploring awareness and unmet needs in Sjögren’s disease, from both the clinician’s and the patient’s perspective.

We are honoured to welcome Dr Pilar Brito-Zerón, Specialist in Internal Medicine and internationally recognised expert in Sjögren’s disease and autoimmune disorders, as our keynote speaker.

🎙 Topic: Awareness and unmet needs from clinician and patient perspective
Date: 23 July 2026
Time: 17:00 CET

👉 Register here: https://urls.fr/H2WM08

Let’s make sure the voices of people living with Sjögren’s are heard.

💙 Because should never be the reality for patients. EULAR Health Professionals in Rheumatology ERN RECONNET EULAR EULAR Young PARE

13/07/2026

Nobody listens. ❌

Not when Sjögren’s affects your lungs.
Not when living with Sjögren’s increases your risk of lymphoma.
Not when something as simple as eating out becomes a challenge because swallowing is difficult, food gets stuck in your mouth or teeth, and embarrassment replaces enjoyment.

These are realities that many people living with Sjögren’s face every day.

Yet too often, these symptoms, complications and daily struggles remain misunderstood or ignored.

This World Sjögren’s Day, we’re giving a voice to what too many patients have experienced for far too long 🩵

It’s time to listen.
It’s time to believe.
It’s time to act.

💙 Because shouldn’t be part of anyone’s journey.
EULAR ERN RECONNET EULAR Health Professionals in Rheumatology EULAR Young PARE