Now that #SickleCell awareness month is ending, it’s time to move on to #SickleCell action month and #SickleCell innovation month and #SickleCell equity month until our health care system is as invested every day of every month as they are in every other disease.
Me and my late processing! 🤦🏾♀️ I have SO many gripes about the “Perk or Pitfall” talk at #NSGC24, primarily that those who work in DRC genetic testing were NOT included on the panel AND there was no ⏱️ for discussion. This might be a 🧵and I ain’t deleting NOTHING… 1/? #genechat
And then cascade testing isn’t free so that’s a problem? C’mon. Don’t do this. @Color (I’ll name it since you didn’t) does offer a great program for families and we aren’t the only one. You prefer perfect over progress? What a privilege.
I 💗 what I do and thankful a dear friend pioneered the way to get GCs in this place (👋🏾 Lauren)2 B in the convo about what real innovation looks like. Include everyone in ur talks. Spoiler alert: testing thru ur employer (that you DON’T do in front of everyone….TF?) is a PERK.
Thank you @LastWeekTonight@iamjohnoliver for covering the battle so many of our #SickleCell warriors face applying for social security disability! Appealing denials for our #Warriors has nearly become our social worker’s full time job! Medical racism knows no bounds.
Not gonna lie, after digesting #NSGC24, not liking the term “ghettoization” to explain the concept of a condition being prevalent only among poor ppl as a side effect of gene therapies, ESPECIALLY w/knowing the lived experiences of those with SCD. #genechat
It’s the last day of #NSGC24 😕 and I can reveal that I brought the WRONG toothpaste (let me know when you see it)… 🤦🏾♀️ I kept mints popping though and it tastes good 🤷🏾♀️ #genechat@Colgate
Words fail me with this incredible Rollnick lecture and sickle disease from SCD Warriors! So happy to have the privilege of learning from the panel. Great job, @aishuarjun 🥹#nsgc24#genechat
Our new CPT code, which values GC time for payors, is a huge effort from volunteers but would not be possible without YOUR dues! 💰💵 Thank you, NSGC members for your membership and we hope you can see how your money is invested in all of us ❤️🧬#NSGC24#genechat