Category: News

We’re Hiring

Sickle Cell Foundation of Alberta is looking for 10 Community development officers/Market research specialists. Background: Our organization exists to support sickle cell patients, their caregivers, and health care professionals in primary and acute care settings. We strive to increase research funding for SCD and to create awareness and education around Sickle Cell Disease both within …

Sickle Cell Consortium’s 1st Caregiver Summit On Tap for Nov. 12-14

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 …

We Must End the Stigma of Pain Medication for Sickle Cell Crises

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 …

CONSA Update: “Newborn screening for sickle cell disease in Africa” Article

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 …

Advocates Lobby US Congress During Virtual Rare Disease Week

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 …

Sickle cell disease and a pivotal moment to end health inequality

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 …

SCDC Released New Fact Sheets on Crizanlizumab, L-glutamine, & Voxelotor

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 …

Pain Narratives in Children with Sickle Cell Disease (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 …