"#Sicklecell disease is a social and economic problem. Newborn screening alleviates many of these challenges. Early diagnosis can help children live healthy and productive lives." – Dr. Charles Kiyaga, Ministry of Health, Uganda #WorldSickleCellDay
Anyone out there have advice for Margaret?
Great public education here. Q. How does a patient go about getting a pain management plan entered into the EHR? My docs tell me that my MCAS is plastered everywhere yet with a DVT in my PICC line in the ED, my pain was ignored & treated like a heroine addict. https://twitter.com/caring_cross/status/1538732934999355393
Thanks to Dr. Els Verhoyen from @ENSdeLyon for presenting at our June 17 event entitled: Surface modification of gene transfer vectors to facilitate entry into cellular targets of gene therapy.
Watch the video in our Members area. Register for free here: https://caringcross.org/become-a-member/
The @CDCgov has created a one-pager to help prepare for the emergency department visits that come with pain crisis in #SickleCellDisease @ConquerSCD @thecuresci #WorldSickleCellDay2022 https://www.cdc.gov/ncbddd/sicklecell/documents/Sickle_Cell_Patients.pdf
On this #WorldSickleCellDay 2022, the #SCD community remembers Dr. Kwaku Ohene-Frempong "KOF", a global #SickleCell champion who established a pilot #SCD newborn screening program in Kumasi Ghana, the first of such programs in Sub-Saharan Africa. #SickleCellMatters #ConquerSCD
US Senators @CoryBooker and @VanHollenForMD introduced an important bill to increase support for those training in benign hematology- on this #WorldSickleCellDay2022 we support all efforts to expand our outreach, service, research, and care for #SCD https://www.vanhollen.senate.gov/news/press-releases/van-hollen-booker-introduce-bill-to-improve-access-to-care-quality-of-life-for-sickle-cell-disease-patients
Our scientific seminar - Surface modification of gene transfer vectors to facilitate entry into cellular targets of gene therapy will be happening later at 3pm EST!
Presenter: Dr. Els Verhoyen from @ENSdeLyon
Register on our Events page now 👉 https://caringcross.org/events/
We have an exciting scientific seminar coming up this Friday, June 17 at 3pm EST:
Surface modification of gene transfer vectors to facilitate entry into cellular targets of gene therapy
Presenter: Dr. Els Verhoyen from @ENSdeLyon
Register now 👉 https://caringcross.org/events/
Congratulations to Prof Solomon Ofori-Acquah on his appointment as President of Sickle Cell Foundation of Ghana. Prof Ofori-Acquah is co-Principal Investigator of the Sickle Pan-African Research Consortium (SPARCO) Ghana, the Ghana site of @SickleInAfrica.
@evansxamuzu https://twitter.com/SCFG_Official/status/1536111946830839810
Sickle Cell Foundation of Ghana (SCFG) is pleased to announce the appointment of Professor Solomon Fiifi Ofori-Acquah as its new President with immediate effect.
Congratulations to Prof. S. Fiifi Ofori - Acquah.
The waiting list for Abecma continues to grow https://www.myelomacrowd.org/myeloma/community/articles/long-waits-CAR-T
Doing everything in India means we can offer CAR-T cell therapy for cancer patients at an affordable rate: ImmunoACT founder and CEO https://www.moneycontrol.com/news/trends/health-trends/interview-from-product-design-to-process-development-doing-everything-in-india-means-we-can-offer-car-t-cell-therapy-for-cancer-patients-at-an-affordable-rate-rahul-purwar-founder-and-ceo-immuno-8677331.html
The 4th #GoCARTCoalition Nurses Best Practice Sharing Session “To Apheresis and Beyond” will take place 16 April, 2022 from 16:30-17:00 (CEST). Presented by Angela Leather, in discussion with expert Ruth Clouth.
Registration is open and free of charge: https://gocart.fyi/nurses4
Great updates from #EHA22 from @CRISPRTX showing very good outcomes for inducing fetal globin in #sicklecell and #betathal patients. https://crisprtx.gcs-web.com/static-files/0bdd16b9-d12f-4f51-9fe1-4fd69e4d4851
FDA Advisory Committee today voted 13-0 to answer “yes” to the question before them regarding the bluebird bio application for gene therapy for transfusion-dependent #thalassemia. This recommendation will now be passed on to the FDA to make an official decision on the application
#NewsfromtheNest: We're pleased to share the outcome of the #FDA’s Cellular, Tissue, & Gene Therapies Advisory Committee discussion of our investigational #genetherapy for treatment of people w/ #betathal who require regular red blood cell transfusions https://investor.bluebirdbio.com/news-releases/news-release-details/fda-advisory-committee-unanimously-supports-beti-cel-gene
The CTGTAC advisory committee was a 2 day dive into @bluebirdbio products for #betathal and #CALD. Amazing to hear luminaries like Drs. Coffin, Hughes, DePersio, Fox, and Butterfield careful consider these revolutionary therapies @US_FDA @FDACBER https://m.youtube.com/watch?v=Eo2BXnGienc
The transition from pediatric to adult care is a challenge. Here is a handy guide @ConquerSCD @globalgti @thecuresci @SickleInAfrica https://www.gottransition.org/resource/?hct-family-toolkit
DARE's @ProfSharonLewin & co. review recent evidence on the role of immune checkpoints in persistent #HIV infection and discuss the potential for employing immune checkpoint blockade as a therapeutic approach to target HIV persistence on ART.
https://bit.ly/38Tw8Tq
#hivcure
Thank you Sen. @RosilicieBogh & @AsmJamesRamos for your support in creating California's groundbreaking network of care for adults with Sickle Cell Disease. We're counting on you to complete what we started in 2019. #NeglectedNoMore
Join @BTMPublicPolicy to advocate for the Life Saving Leave Act - a new bill that would ensure Americans job protection in the event they take time off work to donate bone marrow or other life saving resources. Learn more: https://bit.ly/38zeUuo
