Fesca
@Fscleroderma
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Federation of European Scleroderma Associations aisbl is working to make scleroderma a well-known disease.
EUROPE
Joined May 2012
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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๐ง To celebrate #Neurodiversity Week: ๐ Educate yourself. ๐ Appreciate and support everyone. ๐ 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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๐ Have you ever wondered about the challenges of those living with #scleroderma? Our survey shows that: ๐ธ 60% feel isolated. ๐ธ 80% say physical and emotional difficulties affect relationships. As spring approaches, let's ensure our support lasts through every season! ๐ธ
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๐ Thank you to all the participants for making our World Congress for Patients with #SystemicSclerosis last week in Prague a resounding success! ๐ป Let's continue to drive positive change for people living with #scleroderma and support them on their journey.
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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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Excited for the #SSCPatientCongress session onย "Decoding Drug Development - Patient Organisation Engagement Across the Drug Lifecycle" to gain insights into future treatments and research strategies โ and the role of #scleroderma patients in this process.
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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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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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๐ The 8th #SystemicSclerosis Patient World Congress in Prague starts tomorrow! ๐ค 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. ๐ See you there!
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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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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: #SSCPatientCongress
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โจ 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 ๐ฝ
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3๏ธโฃ common misconceptions about #scleroderma: ๐ต Only older people are affected. ๐ Everyone affected experiences the same symptoms. ๐ 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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๐ฏ 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 ๐ฝ
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๐ 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 ๐
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RT @rarediseaseday: ๐จ IT'S RARE DISEASE DAY GLOBALLY! ๐จ Join us marking #RareDiseaseDay 2024! Spread awareness, share stories, and supportโฆ
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โ What would more policy support mean for people with #scleroderma? ๐นMore funding for research ๐นImproved and earlier diagnosis ๐นBetter specialised care ๐นBroader awareness of the disease Help us overcome barriers for patients and make scleroderma a policy priority!
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๐To kick off #RareDiseaseMonth, here are some facts about #scleroderma: 1๏ธโฃ It affects a small number of people 2๏ธโฃ Patients experience different symptoms 3๏ธโฃ The causes are diverse Let's raise awareness and help patients find the light to bloom!
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