Fesca
@Fscleroderma
Federation of European Scleroderma Associations aisbl is working to make scleroderma a well-known disease.
ID:568404102
http://www.fesca-scleroderma.eu 01-05-2012 16:01:30
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1,1K Followers
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🧠 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!
🔎 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! 🌸
🙌 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.
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!
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.
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!
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.
🗓 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!
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!
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-congre… #SSCPatientCongress
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!
🎯 Save the date!
We've teamed up with the World Scleroderma Foundation 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-congre…
🌈 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 💎
🚨 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
❓ 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!
🌞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!
If you are a patient with scleroderma, please join us to discuss CAR-T in SSc Feb 16, 2024 12:00 PM ET National Scleroderma Foundation us02web.zoom.us/webinar/regist…