The Sickle Cell Community Consortium is gearing up for its inaugural Caregiver Summit, to be held virtually Nov. 12–14. The event is being hosted in partnership with Cleverly Changing, the Parent 2 Parent initiative, and members of the sickle cell disease (SCD) community nationwide. Topics will include mental health and self-care, disease education and management, medical resources and care access, and SCD …
The pain from a sickle cell crisis is one of the most devastating things I have felt. It is unpredictable and can eat away at you physically, spiritually, and mentally. The normal response to severe pain is to cure it or ease it, which usually involves taking some type of painkiller. But I’ve never felt comfortable taking …
The ASH Research Collaborative (ASH RC) has announced the first 10 clinical research consortia to join the ASH RC Sickle Cell Disease Clinical Trials Network. The sites will be able to enroll children and adults living with SCD within their patient populations in clinical trials as part of an unprecedented national effort to streamline operations …
As the 2021-2022 school year begins, it is important that students living with sickle cell disease (SCD) start the year prepared. To help, the Sickle Cell Center at Children’s Hospital of Philadelphia (CHOP) has developed a collection of comprehensive resources on SCD and how it can affect students throughout their academic career. These resources are …
The Consortium of Newborn Screening in Africa (CONSA), launched in 2016 to address the global burden of SCD, shows the value of newborn screening and how it can be implemented in diverse settings throughout sub-Saharan Africa. This American Society of Hematology (ASH) supported consortium aims to introduce standard-of-care practices for screening and early-intervention therapies at participating …
More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to learn about federal legislative issues, meet other …
Covid-19 laid bare the long-standing vulnerability of minority and low-income communities in U.S. society and its health system even as we celebrated the power of scientific innovation to rein in the pandemic. It’s time to turn that innovation, driven by an even greater mind shift, to end inequality in treatment. In perhaps no condition is …
The Sickle Cell Disease Coalition (SCDC) recently released SCD Therapy Fact Sheets to offer high-quality, vetted information on SCD treatments approved for use in the U.S. by the U.S. Food & Drug Administration (FDA): Crizanlizumab, L-glutamine, and Voxelotor. The fact sheets are written at a secondary reading level and are designed to help people living with SCD …
This study aims to assess wellbeing (i.e., pain, anxiety, distress) in children and young adults who have, and have not, undergone a transplant. We are recruiting individuals with SCD ages 8-25, and their parent/caregiver from across Canada to partake. This study has been designed to be completed online to ensure convenience and ease for all …
The NHLBI launched the Cure Sickle Cell Initiative in 2018 to support the development of gene-based cures for sickle cell disease (SCD) that will work for all patients, including those ineligible for bone marrow transplants. Researchers involved in the Cure Sickle Cell Initiative helped develop an accurate, affordable, and easy-to-use device for point-of-care diagnosis of SCD in …
