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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

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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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2 weeks ago
LUPUS EUROPE

🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲.

🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

🤔 So, how can we #kicklupus with prevention?
... See MoreSee Less

🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲. 

🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

🤔 So, how can we #KickLupus with prevention?Image attachmentImage attachment
4 weeks ago
LUPUS EUROPE

🌟 Calling all Lupus Patient Organisation Volunteers! 🌟

🗣️ Your Voice Matters!

We want to hear from YOU!

❓ Are you a volunteer for a lupus patient organisation?

Your insights are invaluable! 💎

Participate in our quick survey, taking just 2-3 minutes of your time, and help us understand volunteer motivations better.

Your feedback will help shape the future and help us understand what we should work on to make our volunteers happier and more motivated.

✍️ You can answer in English or in your own language.

Ready to share your thoughts?

🔗 Click the link below and let your voice be heard!

s.surveylegend.com/-NfBafeCoorOLsOkK1Du

🤗 Thank you for reading this post and considering answering the survey!

Together, we can make a huge difference! 💪
... See MoreSee Less

1 CommentComment on Facebook

🤷‍♂️

4 weeks ago
LUPUS EUROPE

📆 New month, new challenge!

🍁 As the calendar flips to November, our #kicklupus campaign has a new theme!

🤔 Can you guess what this month's theme is all about?

💡 Hint: It's all about implementing measures to help us hold #lupus at bay!

🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus.

Ready to embark on this journey with us? 💪
... See MoreSee Less

📆  New month, new challenge!

🍁 As the calendar flips to November, our #KickLupus campaign has a new theme! 

🤔 Can you guess what this months theme is all about?

💡 Hint: Its all about implementing measures to help us hold #lupus at bay!

🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus. 

Ready to embark on this journey with us? 💪

1 CommentComment on Facebook

💪🏻🍀

1 month ago
LUPUS EUROPE

‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to:

🔹Fear
🔹Lack of trust
🔹Feeling of unsafety
🔹Belief in good health
🔹Lack of recommendations by doctor

💡Let's #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.

𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines

✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

𝐌𝐲𝐭𝐡 3️⃣: Lupus patients can't receive live vaccines

✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms

✅ Vaccines don't worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients.

𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission

✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis.

𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life

✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you

🌏 Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

ard.bmj.com/content/79/1/39
... See MoreSee Less

‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to:

🔹Fear
🔹Lack of trust
🔹Feeling of unsafety
🔹Belief in good health
🔹Lack of recommendations by doctor

💡Lets #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus. 

𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares

One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines

✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

𝐌𝐲𝐭𝐡 3️⃣: Lupus patients cant receive live vaccines

✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

It is crucial this is assessed on a case-by-case basis by your doctor.

𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms

✅ Vaccines dont worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients. 

𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission

✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis. 

𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life

✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you 

🌏 Help us #KickLupus by raising awareness of the importance of immunisation.

Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

https://ard.bmj.com/content/79/1/39Image attachmentImage attachment+6Image attachment
LUPUS EUROPE Uniting people with Lupus throughout Europe
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