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😷 cyber mummy Mar 2
... The blog post where I explain my 'disease' (CMT) includes embarrassing 80s photo of me!
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Rare Disease Day Oct 6
For some, the day we learned of our diagnosis is a happy day. Imagine having your friends and family thinking that you are overreacting or searching for some attention 🤔 👉 Read the testimonies of people who were feeling this way:
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Rare Disease Day Oct 8
Do you want to learn more about digital communications for your campaign? Join our free online webinar! 📅 21st October - 14-16h CEST 📢 Keynote speaker: ( digital communications consultant) 👉 Subscribe now:
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Despite Pain Jul 13
Without awareness, there is very little funding for these rare conditions. Without funding, there is little research being done. Awareness ultimately leads to more medical research, better-informed doctors and greater support for patients.
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Sanofi Genzyme Aug 28
We’re halfway to , which is recognized on the last day of February every year! Join us in raising awareness of the more than 7,000 rare diseases that collectively affect more than 350 million people.
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Princess, The Tower Mar 1
“It’s 4 a.m. and once again I’m unable to sleep… I am on fire…Intense, unrelenting burning pain is affecting all of my limbs… All I can do is wait, hoping the embers will dwindle to a low, more tolerable smolder.”
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Rare Disease Day Sep 30
Tarsha is 22, she is from Australia 🇦🇺 & has been living with since 2018. “I don’t know how to address the gap in research, but I have an idea on where to start. Awareness is the start” 👉Tell your story:
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Chris Anselmo Mar 3
Had a great time at 's celebration last Friady! My wrap-up of the event:
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Rare Diseases Europe Mar 4
Check out highlights from 2020 events that took place around the world in over 100 countries & regions!
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Kelly Cervantes Feb 29
The couple that raises awareness for together, stays together right? Learn more about at . Shout out to all the rare warriors + their caregivers. Your bad assery is unparalleled. I know this is true because a 🐞 told me so.
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Julie Drury Mar 1
Thank you all for reading (tolerating) my Twitter take over for I will leave you with this: 1 - Everyday for patients/families living w is 2 - Canada needs a rare disease strategy and registry.
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Global Shakers Mar 6
🦓 may have passed, but patient advocacy is a fight that never stops. Learn about 20 incredible people fighting to raise awareness of some of the world's rarest diseases & tag a Rare Disease Champion you know in the comments...
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Rare Disease UK Mar 4
That's the end of the Scottish Rare Disease Day Reception - thanks all of our speakers for their moving stories and for sharing them with us today and next year we hope to talk about the progress that's been made!
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Brittle Bone Society Mar 4
The BBS team were delighted to attend the reception today. With over 300 million people in the world living with rare conditions, like OI, it is paramount that we show support and raise awareness.
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NIH Record Apr 17
Rare Disease Day at featured scientific talks, patient stories, poster sessions, panel discussions, art exhibits and more
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Dr Andrew Robinson Feb 29
My younger son has a very rare genetic disorder. Canada needs a proper, coordinated Rare Disease Strategy, with funding for the care of medically-complex people, both children and adults. Not just medical care, but pastoral, and residential care.
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Rare Disease Day Oct 21
We have just started the first webinar in our new series! Matt Grek is currently presenting how you can develop an effective communication strategy using tools that are adaptable for everyone! 📱
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Chief Terence Monahan Feb 29
Our men and women in blue are also fathers, mothers, uncles, and aunts who care very much about their family — especially the little ones. This , we’re proud to highlight our cops and their children who inspire us all!
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RDI Aug 31
.103 countries took part in Rare Disease Day 2020. Let's make Rare Disease Day 2021 cross even more borders. @rarediseaseda
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christina mutena 🇰🇪 Oct 21
Me doing last minute checks before the ' webinar.
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