Sickle Cell 101

Sickle Cell 101, in collaboration with @ucsfsicklecell, is helping raise awareness about the CRISPR-SCD001 gene-editing study targeting sickle cell disease. Interested? Find out if you’re eligible at by clicking the link in our bio. #sicklecell #sicklecell101 #ucsfsicklecell Why am I seeing this post?? Sickle Cell 101 (SC101)’s Commitment to Research? ? Sickle Cell Studies is a patient-friendly research platform created by SC101 to engage with our community about research for sickle cell. SC101 does not endorse or support any specific research study over another. ? ? The goal of our platform, Sickle Cell Studies, is to ensure our community has awareness, access and understanding of all ongoing research for sickle cell and can make an informed decision if they are interested or decide to enroll in a study. ? ? For everything sickle cell research by us for us, or to learn more about this particular study, visit sicklecellstudies.com (link in bio).?

Is the RISE UP study enrolling near you? See if you are eligible to participate in this study, with opportunities to continue receiving mitapivat for a four-year extension. Check out the RISE UP study link in our bio to get more information about the study. Why am I seeing this post? Sickle Cell 101 (SC101)’s Commitment to Research Sickle Cell Studies is a patient-friendly research platform created by SC101 to engage with our community about research for sickle cell. SC101 does not endorse or support any specific research study over another. The goal of our platform, Sickle Cell Studies, is to ensure our community has awareness, access and understanding of all ongoing research for sickle cell and can make an informed decision if they are interested or decide to enroll in a study. For everything sickle cell research by us for us, or to learn more about this particular study, visit sicklecellstudies.com (link in bio).? #AgiosPharmaceuticals #sicklecellstudies #sicklecell101 #sicklecell #RISEUP

We are excited to kick off #WorldSickleCellDay with our first #FacesofSickleCell feature, celebrating Pat McGill, an inspiring 80-year-old living with #sicklecell disease. When we say she is an absolute gem… Life expectancy for those with sickle cell disease can improve with better knowledge, treatment options, management, and care. Stay tuned for more of Ms. Pat’s story in the coming months. A heartfelt thank you to the Sickle Cell Association Marc Thomas Foundation for this meaningful collaboration. #SickleCell101 #SickleCellWarrior

???????? ???????? ???????????? ???????????? ???????????????? Celebrating World Sickle Cell Day! If we missed your flag, please share it in the comments with “World Sickle Cell Day” in your language???? Share our #WorldSickleCellDay poster with your family and friends in your native language. Let's spread awareness together! ???? Artwork in collaboration with @scottythaartist #SickleCell101 #sicklecell #SickleCellAwareness

We at SC101 would like to say THANK YOU, to everyone who has participated in any form of research including surveys, polls, focus groups and so on. You all help make a difference in research in the sickle cell community.

If you are a sickle cell warrior or a parent/caregiver/family of a person impacted by sickle cell disease, complete this brief survey (link in bio) to help improve sickle cell care! We at Sickle Cell 101 have teamed up with the UCSF Sickle Cell Center of Excellence @UCSFSickleCell and The Benioff Children’s Hospital Diversity, Equity, Inclusion and Anti-Racism (DEI/AR) Council @bchdiversity to conduct this research that aims to address antiracism, bias and stigma in sickle cell care. As very well documented, individuals living with sickle cell disease face tremendous barriers, including racism and bias, when they seek to obtain needed care in various healthcare settings. The purpose of this study is to address this critical need through a shared community voice by: 1. Obtaining patient/family/community voices about their experiences and remedies for the structural and interpersonal racism/bias that patients with SCD face in their healthcare. 2. Refining and piloting healthcare provider education and skills building about SCD care within an anti-racism and bias framework. 3. Increasing our knowledge and skills to conduct community engaged research that better address SCD healthcare inequities while prioritizing the community’s voice. You can also opt into a raffle to receive a $25 gift card after completing the survey. At Sickle Cell 101, our commitment and mission for our community is through education, research and advocacy. Your participation in this brief survey helps us continue to achieve this common goal by elevating the voices, experiences and values of our sickle cell community.

Is a curative/transformative therapy right for you? ? ? #sicklecell #sicklecellawareness #curative101

Did you know depression may look different in black women than other groups? ????♀? Black women rank among the most under-treated demographics for depression due to missed diagnosis, limited access to mental health services and stigma. It is important to recognize signs and symptoms even if they’re not stereotypical. #sicklecell101 #sicklecell #blackmentalhealth #mentalhealthawareness

Join us this Saturday, April 20, 2024, for a compelling discussion on current and emerging curative/transformational approaches for #sicklecell disease. We'll cover the latest FDA-approved therapies from Vertex Pharmaceuticals and bluebird bio, alongside investigational therapy from Editas Medicine, and vital information on bone marrow transplant from NMDP. Secure your spot today: https://sc101.link/C101W2 #sicklecell101 #genetherapy #bonemarrowtransplant