Fesca (@fscleroderma) 's Twitter Profile
Fesca

@fscleroderma

Federation of European Scleroderma Associations aisbl is working to make scleroderma a well-known disease.

ID: 568404102

linkhttp://www.fesca-scleroderma.eu calendar_today01-05-2012 16:01:30

1,1K Tweet

1,1K Followers

245 Following

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๐ŸŒžTo kick off #RareDiseaseMonth, here are some facts about #scleroderma: 1๏ธโƒฃ It affects a small number of people 2๏ธโƒฃ Patients experience different symptoms 3๏ธโƒฃ The causes are diverse Let's raise awareness and help patients find the light to bloom!

๐ŸŒžTo kick off #RareDiseaseMonth, here are some facts about #scleroderma:
1๏ธโƒฃ It affects a small number of people
2๏ธโƒฃ Patients experience different symptoms
3๏ธโƒฃ The causes are diverse
Let's raise awareness and help patients find the light to bloom!
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๐Ÿ’Œ 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 ๐Ÿ™Œ

๐Ÿ’Œ 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 ๐Ÿ™Œ
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โ“ What would more policy support mean for people with #scleroderma? ๐Ÿ”นMore funding for research ๐Ÿ”นImproved and earlier diagnosis ๐Ÿ”นBetter specialised care ๐Ÿ”นBroader awareness of the disease Help us overcome barriers for patients and make scleroderma a policy priority!

โ“ What would more policy support mean for people with #scleroderma?

๐Ÿ”นMore funding for research
๐Ÿ”นImproved and earlier diagnosis
๐Ÿ”นBetter specialised care
๐Ÿ”นBroader awareness of the disease

Help us overcome barriers for patients and make scleroderma a policy priority!
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February is coming to an end, but the cold weather will stay with us for a bit longer. Here are 3๏ธโƒฃ tips while we wait for spring: 1๏ธโƒฃ Apply sunscreen 2๏ธโƒฃ Use moisturisers 3๏ธโƒฃ Use a humidifier at home Share your personal hacks with us in the comments ๐Ÿ‘‡

February is coming to an end, but the cold weather will stay with us for a bit longer.

Here are 3๏ธโƒฃ tips while we wait for spring:

1๏ธโƒฃ Apply sunscreen
2๏ธโƒฃ Use moisturisers
3๏ธโƒฃ Use a humidifier at home

Share your personal hacks with us in the comments ๐Ÿ‘‡
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๐Ÿšจ IT'S RARE DISEASE DAY GLOBALLY! ๐Ÿšจ Join us marking #RareDiseaseDay 2024! Spread awareness, share stories, and support those living with rare diseases. Together, we make a lasting impact! #ShareYourColours

๐Ÿšจ IT'S RARE DISEASE DAY GLOBALLY! ๐Ÿšจ 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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๐ŸŒˆ 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 ๐Ÿ’Ž

๐ŸŒˆ 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 ๐Ÿ’Ž
Fesca (@fscleroderma) 's Twitter Profile Photo

๐ŸŽฏ 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 ๐Ÿ”ฝ fesca-scleroderma.eu/patient-congreโ€ฆ

๐ŸŽฏ Save the date!

We've teamed up with the <a href="/Worldsclerofnd/">World Scleroderma Foundation</a> 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 ๐Ÿ”ฝ
fesca-scleroderma.eu/patient-congreโ€ฆ
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3๏ธโƒฃ common misconceptions about #scleroderma: ๐Ÿ‘ต Only older people are affected. ๐ŸŽŽ Everyone affected experiences the same symptoms. ๐Ÿ’Š Scleroderma is curable. Scleroderma isn't a one-size-fits-all condition: it's time to raise awareness and break down stereotypes!

3๏ธโƒฃ common misconceptions about #scleroderma:

๐Ÿ‘ต Only older people are affected.
๐ŸŽŽ Everyone affected experiences the same symptoms.
๐Ÿ’Š Scleroderma is curable.

Scleroderma isn't a one-size-fits-all condition: it's time to raise awareness and break down stereotypes!
Fesca (@fscleroderma) 's Twitter Profile Photo

โœจ 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 ๐Ÿ”ฝ

โœจ 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 ๐Ÿ”ฝ
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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: fesca-scleroderma.eu/patient-congreโ€ฆย #SSCPatientCongress

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 &amp; sessions with patient experts. Read more: fesca-scleroderma.eu/patient-congreโ€ฆย #SSCPatientCongress
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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!

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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๐Ÿ—“ The 8th #SystemicSclerosis Patient World Congress in Prague starts tomorrow! ๐ŸŽค 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. ๐Ÿ‘€ See you there!

๐Ÿ—“ The 8th #SystemicSclerosis Patient World Congress in Prague starts tomorrow!

๐ŸŽค 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.

๐Ÿ‘€ See you there!
Fesca (@fscleroderma) 's Twitter Profile Photo

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.

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.
Fesca (@fscleroderma) 's Twitter Profile Photo

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!

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!
Fesca (@fscleroderma) 's Twitter Profile Photo

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.

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.
Fesca (@fscleroderma) 's Twitter Profile Photo

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!

The 2nd and final day of #SSCPatientCongress brought interesting insights into the gut's role, addressing fatigue, &amp; exploring the latest in #scleroderma research, &amp; provided practical advice for patients &amp; HCPs. Thanks to everyone who participated &amp; contributed! Until next time!
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๐Ÿ™Œ Thank you to all the participants for making our World Congress for Patients with #SystemicSclerosis last week in Prague a resounding success! ๐ŸŒป Let's continue to drive positive change for people living with #scleroderma and support them on their journey.

๐Ÿ™Œ Thank you to all the participants for making our World Congress for Patients with #SystemicSclerosis last week in Prague a resounding success!

๐ŸŒป Let's continue to drive positive change for people living with #scleroderma and support them on their journey.
Fesca (@fscleroderma) 's Twitter Profile Photo

๐Ÿ”Ž Have you ever wondered about the challenges of those living with #scleroderma? Our survey shows that: ๐Ÿ”ธ 60% feel isolated. ๐Ÿ”ธ 80% say physical and emotional difficulties affect relationships. As spring approaches, let's ensure our support lasts through every season! ๐ŸŒธ

๐Ÿ”Ž Have you ever wondered about the challenges of those living with #scleroderma?

Our survey shows that:

๐Ÿ”ธ 60% feel isolated.
๐Ÿ”ธ 80% say physical and emotional difficulties affect relationships.

As spring approaches, let's ensure our support lasts through every season! ๐ŸŒธ
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๐Ÿง  To celebrate #Neurodiversity Week: ๐Ÿ“š Educate yourself. ๐Ÿ™Œ Appreciate and support everyone. ๐Ÿ‘‹ 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!

๐Ÿง  To celebrate #Neurodiversity Week:

๐Ÿ“š Educate yourself.
๐Ÿ™Œ Appreciate and support everyone.
๐Ÿ‘‹ 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!
Fesca (@fscleroderma) 's Twitter Profile Photo

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

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