A very informative webinar highlighting the amazing work that is being done to drive forward change surrounding how we coordinate holistic care for #RareDiseases ! A huge thank you to all of our speakers and attendees who shared meaningful insights đź’«đź’«
As PhiTech Bioinformatics, we are excited and proud to announce that we have released our #MultiOmics based clinical decision support system, Genomics & More (G&M), with novel Diagnostic Transcriptome solutions for #RareDiseases .
genomicsandmore.com
#RNASeq #GenomicsAndMore
📢We are pleased to announce that JARDIN has been part of the ERNs Coordinators' Meeting 2024!
Our coordinator, Till Voigtländer, has informed about the Joint Action on Rare Diseases and #ERN Integration during this important meeting.
#RareDiseases #ERN eu #HealthUnion #EU4Health
The last keynote of the #THE3RLĂ„ND2024 conference is given by Simone Mayer, professor for systemic cellular #Neuroniology at KIT Karlsruhe, introducing her groundbreaking work on human #brain #organoids as models of #RareDiseases , a significant step towards #PersonalizedMedicine !
In a World-first, Children’s Hospital of Eastern Ontario (CHEO) Researchers Use AI to Find Children with Undiagnosed Rare Diseases - please check the link for more information ow.ly/u1Ii50RSrc9 CHEO Ottawa #RareDiseases #PediatricResearch #ChildHealth #AI
enlighted to announce our publication in nature shedding light on rare hereditary diseases. Our team, led by Dr. Safarian Lab, decoded the 3D structures of FLVCR1 & 2, revealing their role in choline & ethanolamine transport.
s.fhg.de/UqsZ
#RareDiseases #fraunhofer
One of our #RareImpactAwards Industry Innovators is SpringWorks, developers of the first FDA-approved treatment for adults with progressing #DesmoidTumors who require systemic treatment.
Meet all of the 2024 Honorees: rareimpact.org
Delighted that the poster abstract that I submitted ranked Top Ten out of over 170 submissions at #ECRD2024 ! Huge thanks to EURORDIS-Rare Diseases Europe for highlighting #HealthcareTransition for #RareDiseases đź’« A wonderful conference with fruitful discussion from start to finish! đź’«
Jaboticaba Peel Reduces Inflammation and Controls Blood Sugar in People with Metabolic Syndrome - please check the link for more ow.ly/WFW950RQNfw AgĂŞncia FAPESP #MetabolicSyndrome #RareDiseases #BloodSugar #Nutrition #JaboticabaPeel #HealthyEating
May 20 is #ClinicalTrials Day ! Today we recognize the trailblazing members of our clinical team & the investigators leading our #ClinicalTrials . We thank you for your dedication to the development of novel therapies for patients with #RareDiseases and #InfectiousDiseases . ACRP - Assoc. of Clinical Research Profession
FDA Approval of Omaveloxolone for Friedreich's Ataxia Marked Progress Amid Ongoing Gene Therapy Research and Community Hopes - please check the link for more ow.ly/Bszq50RStn7 #FDA #Omaveloxolone #FA #FriedreichAtaxia #GeneTherapy #RareDiseases #OrphanDrugs
Our #CareCoordination webinar is happening this week! Will you be joining us? Hear from the work that our colleagues from EURORDIS-Rare Diseases Europe, Children's Health Ireland and Genetic Alliance UK are doing to improve how care is coordinated across services for families living with #RareDiseases đź’«
One of our #RareImpactAwards winners is Irfan Patel from #Delaware !
A caregiver to kids with methylmalonic #acidemia , and himself recently diagnosed, Irfan got this disorder included in newborn screening and is a Rare Action Network Ambassador and #RDAC member! rareimpact.org
Incredibly excited for this upcoming symposium on #HLRCC thanks to HLRCC Foundation!! Please join us! #RareDiseases #zebras #patientadvocacy
Scientists at King’s College London Create a Tailored Drug for Triple-Negative Breast Cancer - please check the link for more information ow.ly/LO9v50RQLQ2 #TNBC King's College London #BreastCancer #PrecisionMedicine #TripleNegative #CancerResearch #RareDiseases
đź©şđź“”The CIBERER 's Decalogue with recommendations for communicating scientific results in #RareDiseases to people living with rare diseases and complex conditions and their families is now available.
👩‍⚕️🔎Consult and download the decalogue with the #recommendations ❤️‍🩹👇
#Spain
Diagnostic algorithm for the identification of #rarediseases presenting with #lymphoproliferation (lymphadenopathy, splenomegaly, hepatomegaly or lymphocytic organ and tissue infiltration).
It is not all about infectious diseases and lymphoid malignancies!
dovepress.com/the-etiologic-…
