Rare Disease Day
@rarediseaseday
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
ID:19982434
http://www.rarediseaseday.org 03-02-2009 16:44:43
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EURORDIS-Rare Diseases Europe
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Beacon for Rare Diseases
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
NORD
National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
RARE Revolution Magazine
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Raras pero Reales
Sanofi, comprometidos con el descubrimiento de terapias para pacientes con #EnfermedadesRaras. https://t.co/wduV3mGwsQ
You only have nine days left to submit a nomination for the next EURORDIS-Rare Diseases Europe Black Pearl Awards, the organisation's official event in the lead-up to Rare Disease Day.
🏆 Shine a light on those who deserve it the most!
👉 blackpearl.eurordis.org/nominate/
#EURORDISAwards
Do you want to become a part of the history of Rare Disease Day?
Why not become one of the faces of #RareDiseaseDay 2024!
📽️ Submit your video by Friday by DM or send it to us at [email protected].
#ShareYourColours #rarediseases #community #RaisingAwareness
Good news‼️ 🥳
The deadline to send in your video submissions for the #RareDiseaseDay 2024 video has officially been extended!
🚨 Deadline: 1 September 🚨
Email us at [email protected], send them via DM or use our submissions portal:
🎦 form.jotform.com/232324120667348
Need some inspiration? 💡
Join people across the globe in sending messages just like this one to be featured as part of the official #RareDiseaseDay 2024 video! #ShareYourColours
Send us your submission by DM or contact us at [email protected] for more information!
Do you want to be part of the official #RareDiseaseDay 2024 video? 📽️
Now is your chance!
To send in your contributions or get more information on how you can get involved, DM us or contact us at [email protected]!
#LightUpForRare #ShareYourColours #video
📣 We want to hear your opinion on newborn screening for rare diseases!
Express it by taking the new global #RareBarometer survey 👉 tiny.cc/survey_NBS_RD
#RareDiseaseDay #NewbornScreening #RareDiseases #ShareYourColours #LightUpForRare #Diagnosis #Worldwide #Community
Did you take part in #RareDiseaseDay 2023? We want to hear from you! 📣
Help us grow the campaign for 2024 by sharing your feedback. What did you like? What can we improve?
Fill out our short survey 📋 here 👉 cutt.ly/042NtQR
#RaiseAwareness #RareDiseases
Throughout February, you shared your colours 💚💙💜 in multiple ways!
Today we would like to showcase your bright and vivid #RareDiseaseDay art pieces 🎨.
Do you know already what you will create for 2024?
#community #raredisease s #raredisease
🔥This February, the Global Chain of Lights was even more powerful with everyone joining the #LightUpForRare movement at home!
The community was united under the #RareDiseaseDay colors & the global call for equity
Time to look back at some of your best use of guirlands
#community
Even if #RareDiseaseDay 2023 is over, we still raise awareness about #RareDiseases
The National Alliance Child & Youth Care of Zimbabwe, Fondation Ipsen - Rare but not Alone & EURORDIS-Rare Diseases Europe produced an #activity & #LessonPlan for #teachers and their teenage #students
🔴It is here: cutt.ly/c4a49St
Du har väl inte missat att Nordic Rare Disease Summit 2023 äger rum den 17 april? Kostnadsfritt och anmälan är ännu öppen!
📅 17april kl. 09.00-17.00
🌍 Centrala Stockholm eller digitalt
🗣️ Konferensen är på engelska!
Läs mer här: sallsyntadiagnoser.se/nordisk-konfer…
#SällsyntaDiagnoser
Thank you Pope Francis and uniamomalattierare for your continuous support in raising awareness for the 300 million people living with a rare disease!
Yesterday was #RareDiseaseDay .
We would like to sincerely thank 🙏 everyone that took part in the campaign! We invited you to #LightUpForRare ✨ and to #ShareYourColours 💙💚💜 and you answered our call beautifully.
Together let's continue advocating for a more equitable society!
What a grandiose final with the Americas joining our Global Chain of Lights ✨!
With the #LightUpForRare movement, let’s continue to raise awareness for people living with a rare disease.
👉cutt.ly/MPUWDKx
We did it again!
ERN ReCONNET 🇪🇺 lights up the Leaning Tower of Pisa on #RareDiseaseDay 2023 to raise #awareness and generate change for the 300 million people worldwide living with a #raredisease , their families and carers.
ERN ReCONNET. More than a Network.
Rare Disease Day
It’s Africa and Europe’s turn to display the #RareDiseaseDay colours ✨💙💚💜✨
Illuminations all around the world form our Global Chain of Lights 👉 cutt.ly/MPUWDKx
#LightUpForRare
On #RareDiseaseDay we must acknowledge the importance of addressing #mentalhealth in this community.
Living with a rare disease places additional strains on mental health & well-being.
Psychosocial & community-based mental health support should be prioritised.
#MHPSS
This #RareDiseaseDay , we call for action to eliminate barriers preventing people living with a rare disease's full participation in society.
Share our Official Rare Disease Day video, translated into over 40 languages, to spread our call for equity!
👉 youtube.com/watch?v=bCxtcx…