Top Tweets for #ProjectBabyDillo
Watch @GeraldineBliss testify before the @TexasHouse Appropriations Committee on #RareDiseaseDay in support of #ProjectBabyDillo, which aims to do comprehensive genetic testing on babies in TX NICUs, up to 50% of whom have genetic conditions: https://t.co/qckugoJlzG
Project Baby Dillo aims to provide whole-genome sequencing to critically ill babies and children. We invite you to join us in supporting Project Baby Dillo. txrare@org #txrare #projectbabydillo #wholegenomesequencing #rarediseaseadvocate #community #texas #careaboutrare
@MyositisSupport is proud of supporting #projectBabyDillo to improve health outcomes for Texas children
Critically ill babies and children in TX need #ProjectBabyDillo. ARPA funding can improve health outcomes for critically ill babies and children & reduce Medicaid spending. #TXLege @SenJaneNelson @loiskolkhorst @SenatorLucio @DrBuckinghamTX @DrSchwertner
Critically ill babies and children in TX need #ProjectBabyDillo. ARPA funding can improve health outcomes for critically ill babies and children & reduce Medicaid spending. #TXLege @SenJaneNelson @loiskolkhorst @SenatorLucio @DrBuckinghamTX @DrSchwertner
Thank you #ProjectBabyDillo supporters! @KIF1A @cure_mito @LGS_Foundation @MyositisSupport @CureSHANK @BDSRA @GlobalGenes @curestxbp1 @taylorstale @rarebasepbc @rdii_org @TxDisabilities @combined_brain @MPSSociety @TheAkarifoundat @smashSMARD @NeenaNizar @SLC6A1_Mom
Critically ill babies and children in TX need #ProjectBabyDillo. ARPA funding can improve health outcomes for critically ill babies and children & reduce Medicaid spending. #TXLege @SenJaneNelson @loiskolkhorst @SenatorLucio @DrBuckinghamTX @DrSchwertner
Grateful for the opportunity to advocate for #ProjectBabyDillo this morning with @DrBuckinghamTX ‘s office. We shared that providing #WGS to critically ill babies and children would improve health outcomes and decrease healthcare spending. #TXLege
@EMoriartyWade @EveryLifeOrg @SmithSolve @leslieinlr @Ataxia_and_Me @teaminspire @RareDiseaseDad @TerriEllsworth @duchDad_blog @KimSteeleMD @NeenaNizar @lilannalaurent @livinlavidalopo @RachelleM_Dixon @addiengeorge Providing a fast diagnosis & access to treatments can improve health outcomes and significantly decrease the economic burden of living with a #RateDisease. #ProjectBabyDillo would provide access to rapid #WGS for critically ill babies and children in Texas. #TXLege
#ProjectBabyDillo can help end the #DiagnosticOdyssey for NICU & PICU #TXPatients by providing rapid #WGS to critically ill babies and children when minutes matter in helping achieve their best health outcomes. #TXLege
In advocating for #ProjectBabyDillo @KhrystalKDavis shared about @TracyDixonSalaz Lengthy #RareDisease diagnoses take a financial & emotional toll on families. Genomic data is valuable even when it doesn’t provide immediate treatment. #TXLege
@julievraskin @NeenaNizar @deana @sanathkr_ @lukebrosen @livinlavidalopo @flanagan_se We’re pursuing #projectbabydillo now to provide #WGS to eligible NICU & PICU Texas patients . I believe we will have to. NBS laboratories are running out or out of space. We just can’t keep adding new equipment and reagents for new conditions.
@NHGRI_Director @genome_gov We just announced the pursuit of #ProjectBabyDillo in Texas last week. We are grateful for the data from #ProjectBabyBear & the NSIGHT program.
@aggievic14 @thegr8chalupa I want to connect with these amazing advocates too! I founded @txrare & just announced #projectbabydillo to provide #WGS to TX NICU & PICU patients. It would be amazing to get all the above advocates together in a room.
We need #ProjectBabyDillo in #Texas to follow on the footsteps of #ProjectBabyBear in California. We can help many medically fragile babies and children affected by genetic conditions. Let’s do this! @CalRare @radychildrens @ryanjtaft @illumina
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