If you or someone you know or provide care for has RUNX1 Familial Platelet Disorder, please reach out to the @genome_gov RUNX1 Natural History Study. #HemeTwitter#RUNX1#FPD
https://t.co/avvNnwmVgr
Check out my @nih_nhlbi colleague @bhavishap29 ‘s poster reporting our work in patient reported outcomes in #VEXAS. Patients reported high symptom burden. #ASH24@ASH_hematology
Congrats to @FernandoCatto for his @ASH_hematology achievement award! 🥇 He presented our work on immunodeficiency in the @nih_nhlbi cohort of #TBDs, mostly adults with TERT/TERC mutations. A great way to finish the conference! #ASH24@emmamgroarke@cedunbar80
Farewell #ASH24. It has been a real pleasure, a great source of information, and an amazing opportunity for collaborations.
I’ve enjoyed sharing my experiences, and I only regret I could not share even more of the amazing hematology with everyone.
@RUNX1Research Enrollment in our study is absolutely free. For those who can join us in Bethesda at the @NIHClinicalCntr we are able to provide transportation and lodging. And we cover the costs of all testing (which is only to your level of comfort and desired involvement) #RUNX1
If you or someone you know or provide care for has RUNX1 Familial Platelet Disorder, please reach out to the @genome_gov RUNX1 Natural History Study. #HemeTwitter#RUNX1#FPD
https://t.co/avvNnwmVgr
We also encourage all of our study participants and their families to connect with @RUNX1Research where they will find an amazing community of caring providers, researchers, and most importantly other people also on their RUNX1 Journeys. #RUNX1#HemeTwitter#Platelets
For those with lifelong bleeding, bruising, and/or low platelets but no diagnosis, the @genome_gov RUNX1 Program can offer focused testing for those without the resources to get more comprehensive testing elsewhere at no cost. Enrollment in our study is also free of cost.
Diversity in research is essential for research equity and equipoise. This is important for treatment AND natural history studies. At @genome_gov#RUNX1 Natural History Study we strive to learn about ALL people with FPDMM.
#ASH24#HemeTwitter@ASH_hematology
For those with lifelong bleeding, bruising, and/or low platelets but no diagnosis, the @genome_gov RUNX1 Program can offer focused testing for those without the resources to get more comprehensive testing elsewhere at no cost. Enrollment in our study is also free of cost.
If you or someone you know or provide care for has RUNX1 Familial Platelet Disorder, please reach out to the @genome_gov RUNX1 Natural History Study. #HemeTwitter#RUNX1#FPD
https://t.co/avvNnwmVgr
At an #ASH24 that saw the wonderful blinatumomab results, it is frightening that pediatric AIHA can have mortality rates approaching 10%. We need better diagnostics, understanding and treatments.
Dr. Rachael Grace of @DFBC_PedCare presents a comprehensive analysis of pedi AIHA. Half of patients will have one episode. For the it is a recurrent condition. With 70% untested, there is a need for more universal genetics to help stratify risks/treatment. #ASH24#HemeTwitter
How rare is “rare”?
@mmanupe presents uRADAR data demonstrating that with transnational efforts we can better identify, study, and even treat vanishingly uncommon disorders, which may actually be more prevalent than we think #ASH24#HemeTwitter@ERNEuroBloodNet
Iron deficiency is a critical issue during pregnancy. Oral repletion is inefficient with side effects. Traditional IV is intensive. Mary Morgan (@Sunnybrook@uoftmedicine) provides compelling data for ferric derisomaltose total dose infusion to treat pregnancy related #IDA#ASH24