[Automatic repost https://twitter.com/dystobot/status/1650472210392383493]

RT @YvonMezz: Vivre avec une maladie… rare. La dystonie. #amadys #association #maladiesrares #maladierare #rarediseaseday #enparlercestdejaaider #handicap https://t.co/XdZzJugmj7

Nicht nur im Aktionsmonat Februar ist es wichtig, auf die Herausforderungen von Betroffenen Seltener Erkrankungen aufmerksam zu machen - das gilt auch für alle anderen Monate des Jahres! Hier gehts auch zu unserem Erklärvideo zum Thema: https://youtu.be/r4h5F056xbs #rarediseaseday

On the occasion of the #RareDiseaseDay, I signed an open letter to the President of the European Commission, Ursula Von der Leyen, calling for an #European strategy for #rarediseases.

Read the full open letter: https://bit.ly/3T1DJlo

@EPPGroup @psdparleuropeu @ppdpsd

🐦🔗: https://n.respublicae.eu/mgracacarvalho/status/1633878771005788161

RT @ViolaRoberto: Unlocking the potential of #DigitalHealth = better diagnoses & personalised treatments of diseases.

Pooling data & analysing them with #HPC & #AI help 🇪🇺 health sector, doctors & patients, with prevention, analysis and cure, including #RareDiseases in Europe.

#RareDiseaseDay

🐦🔗: https://n.respublicae.eu/RoboticsEU/status/1633411765852594177

RT @Parlimag: "Europe is shaped by Christianity and thus by the conviction that we should be measured by how we treat the smallest, the weakest and those who are rarely in focus"

✍️ @weisspernille writes 🔽 #PartnerContent #RareDiseaseDay
https://www.theparliamentmagazine.eu/news/article/health-union-for-children-with-rare-diseases

🐦🔗: https://n.respublicae.eu/WeissPernille/status/1632083752473034753

Check out the #Roundup of our #RareDiseaseDay campaign here:
https://medipace.com/2023/02/22/rare-disease-day-2023/

Topics include:
- #FamilyPerspectives & #PatientStories
- #PatientEngagement
- #OvercomingChallenges

Special thanks to our network, colleagues and Ines and Nick for sharing your thoughts!

Am 28.02 2023 war "RareDisease" Day.

#rarediseaseday
#kennedysdisease

https://www.rarediseaseday.org/

RT @Parlimag: 🤔 A health union for children with rare diseases?

✍️ @weisspernille calls for bold policy solutions to help children with rare diseases 🔽 #PartnerContent #RareDiseaseDay
https://www.theparliamentmagazine.eu/news/article/health-union-for-children-with-rare-diseases

🐦🔗: https://n.respublicae.eu/WeissPernille/status/1631377080989491203

RT @uniamofimronlus: This #RareDiseaseDay, 48 MEPs have signed a letter urging Ursula von der Leyen to support the 30 million European citizens living with a rare disease.
Thanks to @brandobenifei and @Rosannaconte_
👉 https://www.eurordis.org/it/meps-call-on-commission-president/

🐦🔗: https://n.respublicae.eu/brandobenifei/status/1631334985876611075

Inspiring to see @shirastrongin (3'15" in). So happy to see her blossom, having known her for years now. (I first wrote about her in 2014).
#FDA #RareDiseaseDay 2023: “Intersections with Rare Diseases – A patient... https://www.youtube.com/live/ylk7eYTgUMM?feature=share via @YouTube

Yesterday, our team came together on #RareDiseaseDay to share our colors & reaffirm our commitment to opening new therapeutic possibilities for patients in need of breakthroughs. We stand in solidarity with the rare disease community every day & together, we are #ManyStrongProud. 💪

Der gestrige #RareDiseaseDay machte auf die Belange von Betroffenen seltener Krankheiten aufmerksam. Die EU bietet Anreize, Arzneimittel zur Behandlung seltener Krankheiten zu erforschen & zu entwickeln. Bei #Biomedicines berät das Paul-Ehrlich-Institut bei der Einstufung als "Orphan drug".

I somehow missed Rare Disease Day yesterday, 28th February, which is a bit of a faux pas for a carrier of a rare disease gene (Classic PKU) and a dad to a kid with PKU. I wouldn’t have missed it on the Other Site. Isolated communities excel at using Twitter to cohere around spotlight days or months. But in good news today I’ve found two other Mastodonians using the PKU #. Our rare community just grew a little. #RareDisease #RareDiseaseDay #PKU #phenylketonuria #Metabolic #PKUlife

RT @AndriPapadopou3: As we celebrate the #RareDiseaseDay 2023 the EU RD Platform https://youtu.be/qKq4IJP6jKo is working hard on getting all European rare disease registries onboard to end the fragmentation of #raredisease patients data and advance research on RDs. https://eu-rd-platform.jrc.ec.europa.eu/_en @EU_ScienceHub

🐦🔗: https://n.respublicae.eu/EU_ScienceHub/status/1630873693113942018

"What we need is a #PublicPrivatePartnership approach, because the current drug development model does not work in the case of #UltraRareDiseases"

➡️See Nick Sireau's full interview:
https://www.youtube.com/watch?v=RKzwBmUYKF4

➡️Read the full article about overcoming challenges in #PatientEngagement in the #RareDiseaseCommunity: https://medipace.com/2023/02/28/raredisease-community/

#PatientEngagement #RareDiseaseDay

RT @koekoeksjong68: Het is vandaag #RareDiseaseDay
voor vele families een complexe uitdaging. Een zoektocht naar hoop, antwoorden, lotgenoten en steun.

Geleophysic Dysplasia is de ziekte die twee van mijn kinderen hadden...

🐦🔗: https://n.respublicae.eu/Esther_de_Lange/status/1630822437389467648

RT @EKHA_EU: Challenges & unmet needs remain significant in the care pathway for rare kidney disease patients.

👉On #RareDiseaseDay we call for more awareness, early diagnosis, investments in R&D and improved management of rare kidney diseases.

#LightUpForRare

🐦🔗: https://n.respublicae.eu/BuschmannMartin/status/1630822786640871426

Today is Rare Disease Day. Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Find out more at

https://www.rarediseaseday.org/what-is-rare-disease-day/

#RareDiseaseDay

Zebras unite. #rarediseaseday #raredisease #TTTS

#thicktrunktuesday #rarediseaseday #memes2023 #flipboard #Wissing #LastPass #songsormoviesaboutmystereis #ifcatscouldtalk #elderning #waffle403 #diadeandalucia