🔔 The deadline for IHI call 4 is TWO months today!
📚 Translational knowledge in minipigs
🩸Patient-centric #BloodTests
🏥Inclusive #ClinicalStudies
🧍Better trials for #RareDisease
🌱Improving the #environment impacts of #healthcare
Details: http://europa.eu/!CYj638

🔎Can you improve #ClinicalTrials for #RareDiseases?
🧬The biology of rare diseases is poorly understood
🩺Tiny numbers of patients make it hard to run clinical trials
➡️Apply now to create trial designs that speed development of #RareDisease treatments
👉https://europa.eu/!CYj638

Hello 👋 Just checking, do we have an Rare Disease community here on Mastodon?
#RareDisease #RareDiseaseIreland #RareDiseaseCommunity #UsherSyndrome

Spinobulbäre Muskelatrophie Typ Kennedy SBMA

Info hierzu via DGM:

https://www.dgm.org/muskelerkrankungen/spinobulbaere-muskelatrophie-typ-kennedy-sbma

#kennedysdisease #raisingawareness #raredisease

Kennedy's Disease/SBMA Voice of the Patient Report now online on:

https://kennedysdisease.org

Check it out!

#raisingawareness #kennedysdisease
#raredisease

Gestern war #Hypopara-Awareness-Day. Hab ihn verpasst und gerade auch nicht so viel dazu zu sagen. Nur ein paar Grundinfos zur allgemeinen Bildung: Bei Hypopara wird weniger Parathormon in den Epithelkörperchen produziert, dadurch die Aufnahme verschiedener Mineralstoffe gehemmt. Folge können je nachdem z. B. Krämpfe sein, aber auch Ängstlichkeit.
Hormondivergenz ist auch ein Ding 🙃

Hypopara zählt zu den #RareDisease|s, in D gibt's circa 28.000 Betroffene.

So. Weitermachen.

[Automatic repost https://twitter.com/dystobot/status/1653844484206075904]

RT @PatientWorthy: Living with Dystonia - A Story of Overcoming Adversity https://t.co/j88gtJ00hE #Dystonia #RareDisease #BrainDisorder @Dystoniabook1 @ABFbrain

Paisley is dealing with complications of the #RareDisease Neurocutaneous Melanocytosis.
Life is hard for the Gritzuk family. Help them out: https://gofund.me/0427ad63

Very proud to help other workpackage leaders & participants present @MELCAYA_EU at the @MPNEurope meeting yesterday and today in particular thanks to @MelanomRomania, seeing many old friends and devoted patient advocates in skin #RareDisease as a bonus thanks to @NevusN!

Light-Activated Therapy Improves Vision in Inherited Disease Trial

A clinical trial shows a light-activated #protein from an injected #gene improves visual abilities in people with advanced retinitis pigmentosa, an #inherited #eye disorder.

https://sciencebusiness.technewslit.com/?p=44734

#News #Science #Business #Biotechnology #GeneTherapy #RP #Vision #Genetic #LightActivated #Chemistry #ClinicalTrial #Retina #RareDisease

[Automatic repost https://twitter.com/dystobot/status/1651454937623146496]

RT @HeartBravoFl: Appointment today with Neuro today and he brought up #Botox in my foot for #dystonia Who would think there could be one more #raredisease I could have? I have more questions than answers. #MedTwitter Do I need to see a #movementspecialist or my #Neuro can handle this? https://t.co/TCPPTxdJbV

SBMA - Spinobulbäre Muskelatrophie Typ Kennedy

https://kennedysdisease.org/

#sbma #kennedysdisease #raisingawareness #raredisease

RT @EU_AfricaPerMed
Join this free #onlinecourse "From lab to clinic: translational research for #RareDisease"

More information and link here:
https://www.ejprarediseases.org/new-session-of-the-mooc-from-lab-to-clinic-translational-research-for-rare-diseases-launching-today/ https://twitter.com/ERANET_PerMed/status/1647940474353881088

#chatGPT #openAI #insuranceBot #rareDisease

@linseigh I’m a little late, but I was just scrolling through the #spoonie posts to feel less alone and offer some support. My #RareDisease is #PulmonaryArterialHypertension. Twelve in a million of us have it. It’s awful! Hang in there, fellow #spoonie 🌻

Elise Maréchal, Ph.D. student in my group, presented her work and @melcaya to this #RareDisease patient group. They have supported research into this rare predisposition to pediatric #melanoma for years and have enabled this very promising European consortium!
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RT @ZoiloRiosSA from birdsite:
Este puente, la asociación #AsoNevus organiza su XXI encuentro en La Puebla de Alfindén.

La reunión anual de la gran familia de la Asociació…
https://twitter.com/ZoiloRiosSA/status/1643626889993416704

RT @cgonzagaj
If you are a patient living with a #RareDisease #UndiagnosedDisease in the US & understand Spanish, you're invited to join our upcoming symposium on the importance of #MolecularDiagnosis in #RareDiseases & approaches to reach one!
📆 Friday April 28, 2023
@OnceUponAGene help?! https://twitter.com/ReMexER1/status/1642949065741574155

For a Kid that was supposed to be dead by now the seven year old makes rather cool easter chickens.

Yes, the Love for #chickens runs in the family.

#kidsart #raredisease

This is an amazing cause and an amazing run. My son was diagnosed with KLS in 2017 and I completely understand the motivation. #RareDisease #KleineLevinSyndrome https://www.portugalresident.com/charity-run-from-london-to-paris-in-aid-of-kls/

[Automatic repost https://twitter.com/dystobot/status/1638951297335578624]

RT @lacroix_becky: #ataxia #dysphonia #dystonia #naf #RareDisease #ataxiaandme #naf https://t.co/eXdQjLD9xq