Top Tweets for #Rarebarometer
📊 @eurordis publishes the results of the latest #RareBarometer survey on #MentalHealth in #RareDiseases.
Despite the evident need for psychological support within the community, the study revealed that access is extremely limited.
👉 https://t.co/UnFxnBKdOH
📊 @eurordis publica los resultados del último #RareBarometer sobre #saludmental en #enfermedadesraras.
A pesar de la necesidad evidente de apoyo psicológico en la comunidad, el estudio reveló que el acceso es sumamente limitado.
👉 https://t.co/UnFxnBKdOH
7 in 10 people living with a rare disease, or caring for someone who does, report poor mental health, a level comparable to the height of the pandemic. The difference is that for the rare disease community, this is not a passing crisis. #RareBarometer
👉 https://t.co/VoaOHChszT
Siete de cada diez personas que viven con una enfermedad rara y sus familias reportan una mala salud mental.
Nuevos datos del #RareBarometer de @eurordis, con casi 10,000 encuestados en 45 países muestran por qué el apoyo a la salud mental debe ser una parte integral del cuidado de las #EERR.💚💜
Info👇
https://t.co/wtWCgl4JRB
7 in 10 people living with a rare disease and their families report poor mental health.
New #RareBarometer data from nearly 10,000 respondents across 45 countries shows why mental health support must be an integral part of rare disease care. 👉 https://t.co/h4VvEiNcv3
⏰ Only 8 days left!
What do 10,700+ people living with rare and undiagnosed conditions tell us about mental health and wellbeing?
Join us on 18 June as we unveil the latest #RareBarometer findings and discuss what must change.
👉 https://t.co/jE089O77O1
🚨The results are coming soon. And they tell an urgent story!
10,700+ people shared how rare & undiagnosed conditions impact mental health and wellbeing. Join us on 18 June as we unveil the latest #RareBarometer findings and discuss what must change.
👉 https://t.co/jE089O77O1
🧠 As #EuropeanMentalHealthWeek comes to a close, one message remains clear: mental wellbeing must stay a priority beyond this week.
This summer, we will share new insights from our #RareBarometer survey on #mentalhealth in the rare disease community. 👉 https://t.co/c8Shj53xOe
🦋 #Lupus is a rare autoimmune disease that can potentially impact every aspect of life, from daily activities and social interactions to work and access to support.
✍️ Participate in the #RareBarometer survey by @eurordis & make your voice heard
https://t.co/FXieXHuzn1
⏰ Final call! The #RareBarometer survey is closing soon.
If you live with a rare or undiagnosed condition, your experience can make a meaningful difference.
📝Take the survey before 14th of December: https://t.co/7bJTaPnAYu
What helps you live with a rare or undiagnosed condition?
The #RareBarometer survey wants to hear from you.
Our surveys inform policy, shape research, and connect a global rare disease community.
Your voice matters - take the survey today: https://t.co/7bJTaPnAYu
📣 Ζείτε με μία #Σπάνια ή #Αδιάγνωση Πάθηση;
Πάρτε μέρος στη νέα Έρευνα του #RareBarometer και βοηθήστε άλλους #Ασθενείς.
Μην χάσετε την ευκαιρία να ακουστεί η φωνή σας!
⏰ Η Έρευνα κλείνει στις 14 Δεκεμβρίου.
👉 https://t.co/wgyeBQY62F
#ΣπάνιεςΠαθήσεις #Υγεία #RareDiseases
📣 Deadline extended!
POV: When you thought you missed the #RareBarometer survey… but it’s now open until 14 December 😮👇
Don’t wait, we want to hear from you!
👉 Take the survey now: https://t.co/7bJTaPnAYu
This #Movember, we’re encouraging more men living with a rare disease to take part in the latest #RareBarometer survey. Men often make up a smaller share of respondents, so hearing from you helps build a fuller picture of life with a rare condition.
👉 https://t.co/7bJTaPnAYu
🎥 Your voice. Your story. Your impact.
Take the #RareBarometer survey and help build a world that listens to and empowers people with rare conditions.
🌍 25 languages. Thousands of voices. One mission: change.
👉 https://t.co/7bJTaPnAYu
🦋 #Lupus is a rare autoimmune disease that can potentially impact every aspect of life, From daily activities and social interactions to work and access to support.
✍️ Participate in the #RareBarometer survey by @eurordis & make your voice heard
🔗 https://t.co/FXieXHuzn1
Today is #WorldMentalHealthDay. 🧠
Living with a rare disease affects more than the body, it touches every aspect of everyday life.
💬 Take the #RareBarometer survey and help shape care that supports the whole person. 👉 https://t.co/7bJTaPnAYu
💡 Tu experiencia importa. La encuesta Rare Barometer de @eurordis recoge la voz de quienes conviven con una enfermedad rara o no diagnosticada.
👉 Participa aquí: https://t.co/H6mjfg92YT
#FederaciónASEM #MueveteporlasENM #RedASEM #RareBarometer
💡 Every answer matters! The #RareBarometer survey turns lived experience into evidence to improve support for people with rare & undiagnosed conditions.
🌍 25 languages | Results in 2026
👉 Take part: https://t.co/7bJTaPnAYu
💡 Every answer matters! The #RareBarometer survey turns lived experience into evidence to improve support for people with rare & undiagnosed conditions.
🌍 25 languages | Results in 2026
👉 Take part: https://t.co/7bJTaPnAYu
📣 Parents of kids with rare/undiagnosed conditions — your experience can drive change!
Tell us what helps & what’s missing. Your answers shape better support & policies.
👉Take the #RareBarometer survey: https://t.co/7bJTaPnAYu
🌍In 25 languages
#RareDiseases #Advocacy
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