Top Tweets for #RareCommunityProfiles
Rare Community Profiles: How Her Daughter’s MCTD Led Ronda to Help Families Navigate Rare Disease Diagnoses https://t.co/ywRVYSkq5A #RareCommunityProfiles #MCTD #RareDisease #MixedConnectiveTissueDisease
Rare Community Profiles: #RAREis: Advancing Clinical Trial and Patient Equity with the Foundation for Sarcoidosis Research’s Mary McGowan https://t.co/b48inAhyUG #Sarcoidosis #RareDisease #RareCommunityProfiles #RAREis @StopSarcoidosis
Rare Community Profiles: How Two Parents Are Working to Change the Narrative Around CASK Gene Disorder https://t.co/HQ7tgCrxN6 #CASKDisorder #CASKRelatedDisorders #CASKGeneticDisorder #GeneticDisorder #RareDisease #RareCommunityProfiles
Rare Community Profiles: When Sierra’s Son Was Diagnosed with Warsaw-Breakage Syndrome (WABS), She Knew She Needed to Make a Difference https://t.co/p01e6UZ32l #WarsawBreakageSyndrome #WABS #UltraRareDisease #RareCommunityProfiles
Rare Community Profiles: How a Clinical Study Changed Dana’s Trajectory After Desmoid Tumor Recurrence https://t.co/Mjpb64CgdZ #RareCommunityProfiles #DesmoidTumor @DTRFoundation
Rare Community Profiles: How Beth and Madison Helped Publicly Fund the First Cystic Fibrosis (CF) Modulator in Canada https://t.co/GqdfK3sEdy #RareCommunityProfiles #CysticFibrosis #CF #Kalydeco
Rare Community Profiles: The Urgent Need for a Cure for Niemann-Pick Type C: Two Parents Share Their Perspectives https://t.co/biVxW2UddZ #RareCommunityProfiles #NiemannPickDisease #NPC #NiemannPickDiseaseTypeC
Rare Community Profiles: A Mother-Son Pair Discuss the Importance of Wellbeing in Managing NF2-Related Schwannomatosis (NF2) https://t.co/hUzwk2t8YA #NF2Schwannomatosis #NF2 #Neurofibromatosis #NeurofibromatosisType2 #Schwannomatosis #RareCommunityProfiles
Rare Community Profiles: Yellow for Yiannis: Angela’s Mission to Advance Research into IRF2BPL https://t.co/mGjPNrONDc #RareCommunityProfiles #IRF2BPL #IRF2BPLDisorder
Rare Community Profiles: A Conversation with Rallybio CEO Stephen Uden on the Need for Rare Disease Drug Development https://t.co/9dnHDqqViM #RareCommunityProfiles #FNAIT #FetalAndNeonetalAlloimmuneThrombocytopenia #RareDisease
Rare Community Profiles: Creating a Strong Patient Advocacy-Pharma Partnership: How Inozyme Pharma and GACI Global Came Together for Impact https://t.co/1kzhg20jj9 #GeneralizedArterialCalcificationOfInfancy #GACI #RareDisease #RareCommunityProfiles @gaciglobal
Rare Community Profiles: Melanoma Research Alliance’s Marc Hurlbert Shares Milestone Achievement of RARE Registry for Acral and Mucosal Melanoma https://t.co/UobckZyWcG #RareCommunityProfiles #SkinCancer #Melanoma #Oncology @MelanomaReAlli
Rare Community Profiles: Living with Gratitude: How Kate Remained Positive Through Her Two Battles with Glioblastoma https://t.co/ukvw2MNiNO #BrainCancer #RareCommunityProfiles #Glioblastoma #Cancer @NBTStweets
Rare Community Profiles: Empathy through Art: A Mission to Raise Hypoparathyroidism Awareness https://t.co/cEkF38Jcxb #RareCommunityProfiles #Hypoparathyroidism #RareDisease
Rare Community Profiles: Kenzi’s Commitment to Raising Familial Cold Autoinflammatory Syndrome (FCAS) Awareness https://t.co/3Mf0KEI9lW #RareCommunityProfiles #FCAS #FamilialColdAutoinflammatorySyndrome @AAlliance_SAID
Rare Community Profiles: The Cost of Preventive Care in Chronic Illness and Rare Disease—and Why We Need to Talk About It https://t.co/4xJjjHZAxf #RareCommunityProfiles #ChronicIllness #PreventiveCare
Rare Community Profiles: Uplifting Athletes Harnesses the Power of Sport to Benefit the Rare Disease Community https://t.co/pe425cc72d #RareDisease #RareCommunityProfiles #UpliftingAthletes @UpliftingAth
Rare Community Profiles: This Rare Family is Managing CVID, MS, UC, and Double Cortex Syndrome: Here’s How You Can Help https://t.co/eHFCpk9y0B
#CVID #MS #UC #DoubleCortexSyndrome #RareCommunityProfiles
Rare Community Profiles: The Importance of Advocacy: How Gaucher Disease Diagnoses Changed the Garay Family’s Trajectory
Read now: https://t.co/pdZvVrVPoG
#GaucherDisease #RareCommunityProfiles #RareDisease
Rare Community Profiles: DTx Pharma is Developing Innovative RNA Therapeutics for CMT1A https://t.co/xzikQki0Pm
#CharcotMarieTooth #CMT1A #RareCommunityProfiles #CMT @DTxPharma
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