dystobot · @dystobot
5 followers · 5706 posts · Server med-mastodon.com
LAG RLP · @lagrlp
13 followers · 26 posts · Server selbsthilfe.social

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: youtu.be/r4h5F056xbs

#rarediseaseday

Last updated 2 years ago

Maria Graça Carvalho · @mgracacarvalho
9 followers · 2140 posts · Server respublicae.eu

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

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

@EPPGroup @psdparleuropeu @ppdpsd

🐦🔗: n.respublicae.eu/mgracacarvalh

#rarediseaseday #European #RareDiseases

Last updated 2 years ago

Robotics & AI - EU · @RoboticsEU
44 followers · 162 posts · Server respublicae.eu

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

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

🐦🔗: n.respublicae.eu/RoboticsEU/st

#DigitalHealth #HPC #AI #RareDiseases #rarediseaseday

Last updated 2 years ago

Pernille Weiss · @weisspernille
29 followers · 514 posts · Server respublicae.eu

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 🔽
theparliamentmagazine.eu/news/

🐦🔗: n.respublicae.eu/WeissPernille

#PartnerContent #rarediseaseday

Last updated 2 years ago

MediPaCe · @MediPaCe
13 followers · 29 posts · Server mastodon.world

Check out the of our campaign here:
medipace.com/2023/02/22/rare-d

Topics include:
- &
-
-

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

#Roundup #rarediseaseday #familyperspectives #patientstories #PatientEngagement #overcomingchallenges

Last updated 2 years ago

Franky O. · @bluefo
50 followers · 221 posts · Server norden.social
Pernille Weiss · @weisspernille
29 followers · 509 posts · Server respublicae.eu

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

✍️ @weisspernille calls for bold policy solutions to help children with rare diseases 🔽
theparliamentmagazine.eu/news/

🐦🔗: n.respublicae.eu/WeissPernille

#PartnerContent #rarediseaseday

Last updated 2 years ago

Brando Benifei · @brandobenifei
6 followers · 1067 posts · Server respublicae.eu

RT @uniamofimronlus: This , 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_
👉 eurordis.org/it/meps-call-on-c

🐦🔗: n.respublicae.eu/brandobenifei

#rarediseaseday

Last updated 2 years ago

· @drjudystone
754 followers · 688 posts · Server mstdn.science

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).
2023: “Intersections with Rare Diseases – A patient... youtube.com/live/ylk7eYTgUMM?f via @YouTube

#fda #rarediseaseday

Last updated 2 years ago

Ascidian Therapeutics · @AscidianTx
4 followers · 12 posts · Server mstdn.science

Yesterday, our team came together on 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 . 💪

#rarediseaseday #manystrongproud

Last updated 2 years ago

Paul-Ehrlich-Institut · @PEI_Germany
345 followers · 7 posts · Server social.bund.de

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

#rarediseaseday #biomedicines

Last updated 2 years ago

Mark Maguire · @MarkMaguire
826 followers · 2799 posts · Server mastodon.ie

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

Last updated 2 years ago

EU_ScienceHub · @EU_ScienceHub
585 followers · 1681 posts · Server respublicae.eu

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

🐦🔗: n.respublicae.eu/EU_ScienceHub

#rarediseaseday #raredisease

Last updated 2 years ago

MediPaCe · @MediPaCe
13 followers · 29 posts · Server mastodon.world

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

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

➡️Read the full article about overcoming challenges in in the : medipace.com/2023/02/28/raredi

#publicprivatepartnership #ultrararediseases #PatientEngagement #rarediseasecommunity #rarediseaseday

Last updated 2 years ago

Esther de Lange · @Esther_de_Lange
15 followers · 427 posts · Server respublicae.eu

RT @koekoeksjong68: Het is vandaag
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...

🐦🔗: n.respublicae.eu/Esther_de_Lan

#rarediseaseday

Last updated 2 years ago

Martin Buschmann MEP · @buschmannmartin
1 followers · 383 posts · Server respublicae.eu

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

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

🐦🔗: n.respublicae.eu/BuschmannMart

#rarediseaseday #LightUpForRare

Last updated 2 years ago

Kevin Glowacz · @kjg
109 followers · 147 posts · Server hachyderm.io

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

rarediseaseday.org/what-is-rar

#rarediseaseday

Last updated 2 years ago

Eliza · @EHodes
262 followers · 291 posts · Server universeodon.com
Happy Kumar · @vermaji94
0 followers · 15 posts · Server mastodon.social