Am #RareDiseaseDay2023, dem #TagDerSeltenenErkrankungen war ich im #FraunhoferIZI in #Leipzig, mit #biosaxony und #ACHSEeV. Für die @lz aufgeschrieben.
https://www.l-iz.de/leben/gesundheit/2023/03/am-28-februar-im-izi-leipzig-tag-seltener-erkrankungen-518008

RT @AlePrigio
Doing research on rare diseases can be hard (less funds, less journal interest). But all changes when you hear from affected families that are happy to hear about someone investing time in their disease. I am grateful for the support of these families! #RareDiseaseDay2023 https://twitter.com/UniklinikDUS/status/1630505842855272451

RT @BR24
Wer an einer Seltenen Erkrankung leidet, hat einen langen Weg bis zur Diagnose vor sich. Dabei sind diese Erkrankungen in Summe gar nicht so selten. Der #RareDiseaseDay2023 will auf die mangelhafte Situation Betroffener aufmerksam machen. ⬇️ https://www.br.de/nachrichten/wissen/rare-disease-day-seltene-erkrankungen-k-eine-seltenheit,TWfrLuF

[Automatic repost https://twitter.com/dystobot/status/1630795140942929922]

RT @ST_Dystonia: Today is Rare Disease Awareness Day! We need a cure! #Dystonia #DystoniaAwareness #DystoniaCureNeeded #STDystonia #RareDiseaseDay2023 https://t.co/YwoUqSVXUs

RT @MonarchInit
In recognition of #RareDiseaseDay2023, check out what the Monarch Initiative has been doing to support #RareDisease patients and researchers.
https://monarchinit.medium.com/monarch-helps-rare-disease-researchers-and-patients-ac4d7c014d70

To those dealing with rare disease every day, we see you.

To those researching first-ever treatments and cures, we thank you.

To those with the means and desire to help fund miracles, we need you.

#BattenDisease #rarediseaseday2023

Le #CovidLong n’est pas une maladie rare, mais en cette journée, nous avons une pensée pour tous les malades et associations de malades qui se battent au quotidien contre ces maladies

#MaladiesRares
#rarediseaseawareness
#RareDiseaseDay2023
#RareDiseaseDay

#apresJ20 #CovidLong #LongCovid

[Automatic repost https://twitter.com/dystobot/status/1630666771215556628]

RT @AmadysFrance: 28 février 2023 : Journée Internationale des Maladies Rares
AMADYS remercie les adhérents et sympathisants pour leur participation active dans cette journée de sensibilistation.
#maladiesrares #rarediseaseday2023 #Dystonie #dystonia #accéléronslesdiagnosticsmaladiesrares https://t.co/eYdjGVPSe1

[Automatic repost https://twitter.com/dystobot/status/1630644144346484736]

RT @AmadysFrance: 28 février 2023 : Journée Internationale des Maladies Rares
Dystonie, avec @Alliance Maladies Rares accélérons les diagnostics #maladiesrares #rarediseaseday2023 #Dystonie #dystonia #accéléronslesdiagnosticsmaladiesrares https://t.co/osFamKmPe0

In recognition of #RareDiseaseDay2023, check out what the Monarch Initiative has been doing to support #RareDisease patients and researchers.
https://monarchinit.medium.com/monarch-helps-rare-disease-researchers-and-patients-ac4d7c014d70

Rare diseases not so rare! More research and advocacy are needed.

Our lab is headed towards developing solutions for ARPKD 💪 #letsgo

💙💗💚💜
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RT @MadeleineOudin
It’s Rare Disease Day! 300 million people live with rare diseases worldwide. Together, we are not so rare. Proud to show our colors, stripes and genes with my rare daughter Margot and advocate for those with rare diseases. #RareDiseaseDay2023 #raredisease
https://twitter.com/MadeleineOudin/status/1630614136248844308

Time to put this in mastodon.
#rarediseaseday2023
https://twitter.com/jdsitt/status/1498303700724592646?t=rzTRHjo0RoGOXKmGM0GDzg&s=09

[Automatic repost https://twitter.com/dystobot/status/1630621460585758730]

RT @AmadysFrance: 28 février 2023 : Journée Internationale des Maladies Rares
Si la dystonie était une unité de mesure...
Avec @Alliance Maladies Rares accélérons les diagnostics #maladiesrares #rarediseaseday2023 #Dystonie #dystonia #accéléronslesdiagnosticsmaladiesrares https://t.co/ZhfnEAow1X

It's Rare Disease Day!
Help us raise awareness by sharing this video.
#RareDiseaseDay2023 #CavernousMalformation #Cavernoma #GlobalAwareness #RaisingAwareness

[Automatic repost https://twitter.com/dystobot/status/1630598846332952578]

RT @AmadysFrance: 28 février 2023 : Journée Internationale des Maladies Rares
Avec @Alliance Maladies Rares accélérons les diagnostics #maladiesrares #rarediseaseday2023 #Dystonie #dystonia #accéléronslesdiagnosticsmaladiesrares https://t.co/PjbtYxIYnK

David has a genetic condition called DLG-4 Synaptopathy (Shine Syndrome) #RareDiseaseDay2023 #RareDiseaseDay

https://shinesyndrome.org/wp/

RT @pateixidor
Pour les millions de familles qui ont besoin de diagnostic, aide nous en nôtre campagne pour acheter un test de la sueur ! Il sera utilisé en @CHGen_Unikin #cysticfibrosis #RareDiseaseDay2023 @christinatshis @DeniseNyakeru @OAFLAD @SwissIonChannel https://wemakeit.com/projects/cystic-fibrosis-in-africa/show/rewards-and-details?locale=en

[Automatic repost https://twitter.com/dystobot/status/1630576160407953408]

RT @AmadysFrance: 28 février 2023 : Journée Internationale des Maladies Rares
Si la dystonie s'invitait au Stade de France ?
Avec @Alliance Maladies Rares accélérons les diagnostics #maladiesrares #rarediseaseday2023 #Dystonie #dystonia #accéléronslesdiagnosticsmaladiesrares https://t.co/lZXFEgaHB1

RT @MNDScotland
Today is #RareDiseaseDay.

Although motor neuron disease is considered a #RareDisease, it's not as rare as you might think.

Around 1 in 300 people will develop #MND and with no cure, that means 1 in 300 people will die because of MND.

Please retweet! 💙

#RareDiseaseDay2023

Rare disease day: it's important to acknowledge that having a rare disease is very challenging, both physically and emotionally. You feel isolated and misunderstood, plus it’s difficult to find the right medical care. It’s absolutely normal to feel frustrated, scared, angry, or overwhelmed. Most of the time you have to advocate for yourself. #RareDiseaseDay #chronicillness #ChronicPain #mentalhealth#endometriosis #rarediseaseday2023