Federation of European Scleroderma Associations aisbl is working to make scleroderma a well-known disease.
Joined May 2012
- Tweets 1,336
- Following 242
- Followers 1,062
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343 Photos and videos
12 May 2024
Huge thank you to our members who joined us yesterday at our #AGM
We look forward to working together for awareness, research and education in #systemicsclerosis
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26 Mar 2024
🧠 To celebrate #Neurodiversity Week:
📚 Educate yourself.
🙌 Appreciate and support everyone.
👋 Reach out a helping hand.
Whether it's #neurodivergence or #scleroderma, everyone has valuable perspectives. Let's create a world where understanding and compassion thrive!
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22 Mar 2024
🔎 Have you ever wondered about the challenges of those living with #scleroderma?
Our survey shows that:
🔸 60% feel isolated.
🔸 80% say physical and emotional difficulties affect relationships.
As spring approaches, let's ensure our support lasts through every season! 🌸
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18 Mar 2024
🙌 Thank you to all the participants for making our World Congress for Patients with #SystemicSclerosis last week in Prague a resounding success!
🌻 Let's continue to drive positive change for people living with #scleroderma and support them on their journey.
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17 Mar 2024
The 2nd and final day of #SSCPatientCongress brought interesting insights into the gut's role, addressing fatigue, & exploring the latest in #scleroderma research, & provided practical advice for patients & HCPs. Thanks to everyone who participated & contributed! Until next time!
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15 Mar 2024
Excited for the #SSCPatientCongress session on "Decoding Drug Development - Patient Organisation Engagement Across the Drug Lifecycle" to gain insights into future treatments and research strategies – and the role of #scleroderma patients in this process.
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15 Mar 2024
Day 1 of this year's #SSCPatientCongress will offer plenty of news and updates from research, but will also cover very practical topics relevant to #sleroderma patients, for instance in terms of pregnancy, #mentalhealth and hand changes. Looking forward to an informative day!
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15 Mar 2024
Today is the day: The #SSCPatientCongress opens its gates to bring together everyone working to advance understanding and support for those affected by #scleroderma. Join us for the opening session as we work together to contribute to a better future for this patient community.
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14 Mar 2024
🗓 The 8th #SystemicSclerosis Patient World Congress in Prague starts tomorrow!
🎤 Delving into the current landscape and challenges, we'll provide a platform for patient education, networking, capacity building and the exchange of ideas and experiences.
👀 See you there!
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13 Mar 2024
FESCA is convinced that to truly make a difference, patients should be involved at eye level in research, treatment and health policy! That's why we are hosting the #SSCPatientCongress in Prague - an event by patients for patients with #Scleroderma. See you 15-16 March!
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12 Mar 2024
The #SystemicSclerosis World Patient Congress opens its doors in just a few days! Designed by patients for patients, the event will feature renowned speakers from the field of #Scleroderma & sessions with patient experts. Read more: fesca-scleroderma.eu/patient… #SSCPatientCongress
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8 Mar 2024
✨ Happy International Women's Day!
This #IWD, let's send special thoughts to our friends, sisters, wives, mothers and grandmothers who are bravely fighting #scleroderma.
Who are the special women in your life? Honour them today by writing their names in the comments 🔽
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6 Mar 2024
3️⃣ common misconceptions about #scleroderma:
👵 Only older people are affected.
🎎 Everyone affected experiences the same symptoms.
💊 Scleroderma is curable.
Scleroderma isn't a one-size-fits-all condition: it's time to raise awareness and break down stereotypes!
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4 Mar 2024
🎯 Save the date!
We've teamed up with the @Worldsclerofnd and tomorrow is the last day to secure your spot at our on-site event in Prague - the 8th #SystemicSclerosis Patient World Congress.
Don't miss out, register now 🔽
fesca-scleroderma.eu/patient…
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29 Feb 2024
🌈 On this leap day, let's unite to celebrate #RareDiseaseDay!
With the motto "Rare is Many, Strong and Proud" we're honouring all patients and redefining rarity beyond disease 💎
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Fesca retweeted
29 Feb 2024
🚨 IT'S RARE DISEASE DAY GLOBALLY! 🚨 Join us marking #RareDiseaseDay 2024! Spread awareness, share stories, and support those living with rare diseases. Together, we make a lasting impact! #ShareYourColours
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22 Feb 2024
February is coming to an end, but the cold weather will stay with us for a bit longer.
Here are 3️⃣ tips while we wait for spring:
1️⃣ Apply sunscreen
2️⃣ Use moisturisers
3️⃣ Use a humidifier at home
Share your personal hacks with us in the comments 👇
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20 Feb 2024
❓ What would more policy support mean for people with #scleroderma?
🔹More funding for research
🔹Improved and earlier diagnosis
🔹Better specialised care
🔹Broader awareness of the disease
Help us overcome barriers for patients and make scleroderma a policy priority!
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14 Feb 2024
💌 Happy Valentine's Day!
Let's go beyond conventional tokens of love to recognise the fighters among us and those around them for their resilience, kindness and unwavering commitment.
This day is about showing those battling a rare disease that they aren't alone 🙌
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13 Feb 2024
🌞To kick off #RareDiseaseMonth, here are some facts about #scleroderma:
1️⃣ It affects a small number of people
2️⃣ Patients experience different symptoms
3️⃣ The causes are diverse
Let's raise awareness and help patients find the light to bloom!
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