Blog
FDA Grants Orphan Drug Statis New CTX001 Gene Therapy Trial by the CRISPR-Vertex Partnership
CTX001 is an investigational ex vivo CRISPR gene-edited therapy that is being evaluated for patients suffering from TDT or severe SCD in which a patient’s hematopoietic stem cells are engineered to produce high levels of fetal hemoglobin (HbF; hemoglobin F) in red blood cells.
A Call-To-Action for Online Advocacy
Your support is needed to help reach New York State Assembly and Senate members to talk with them about Sickle Cell Disease and Bleeding Disorders.
The President’s Message on Practicing Social Unity
Practicing Social Unity Since the 1990s, the primary focus of the Sickle Cell Thalassemia Patients Network (SCTPN) has been to advocate for the sickle cell community while raising awareness about the disease, because of the extreme need to fill the void for...
Happy New Day
SCTPN Community Health Worker Sabrina J. Lewis Shares Her Story About Advocacy and Care Coordination in the SCD Community As a Community Health Worker with the Sickle Cell Thalassemia Patient Network, various experiences have opened my eyes to truths of what families...
SCTPN POES – – Sickle Cell 101 Forum Was Well Received in Washington Heights
In an effort to increase outreach in to the Latin community in northern Manhattan and the Bronx, the Sickle Cell Thalassemia Patients Network (SCTPN hosted its second English/Spanish Sickle Cell 101 Forum, at the Northern Manhattan I C. The forum is part...
SUPPORT TEAM CELEBRATE LIFE
September is Sickle Cell Awareness Month Celebrate Life is an affirmation to acknowledge and commemorate those living with and suffering from painful and debilitating inherited blood disorders like Thalssemia and Sickle Cell Disease (SCD). The SickleCell Thalassemia...
SCTPN & CUNY/MEC PARTNER TO PRESENT A COMMUNITY AND HEALTH PROFESSIONALS EDUCATIONAL FORUM ON SICKLE CELL DISEASE
The Community Educational Forum on Sickle Cell Disease will be held in the Edison O. Jackson Auditorium, Medgar Evers College, Saturday, October 27, 2018 The Sickle Cell Thalassemia Patients Network (SCTPN) and CUNY/Medgar Evers College are hosting a Community...
Millennials We Need to Talk!
Got to tell you my heart broke just a little. There is such disconnect between many young adults 22 to 33-years of age. At least the ones that we’ve been speaking to lately. I take for granted the relationship that my family has with its children. We encourage and...
Political Action for Sickle Cell Treatment in NYS
Calling on the Sickle Cell Community and its Supporters. We need your help to ensure the passage of the NYS Sickle Cell Treatment Act of 2018. Please take a moment out of your day to call your Assembly and Senate representative to ask them to support this legislation...
FYI: Terms You Need To Know
September is National Sickle Cell Awareness Month These medical terms are commonly used in association with Sickle Cell Disease. Knowing and understanding these terms will aid you in having an informed conversation with your physician or allied healthcare...