United to Conquer Sickle Cell Disease

SCDC Update


Celebrate International Clinical Trials Day 2022

In 2005, International Clinical Trials Day was established to commemorate the day James Lind began the first randomized clinical trial on May 20, 1747; this clinical trial laid the foundation for modern clinical research. To celebrate this day, the Sickle Cell Disease Coalition (SCDC) is hosting a webinar entitled “Global Warriors’ Access, Challenges, and Experiences with Sickle Cell Research” on Friday, May 20, from 9:00am-10:30am ET. This webinar will highlight sickle cell disease (SCD) warriors’ perspectives on the current state of research and clinical trials related to sickle cell globally. Learn more and register to attend here. 

SCDAA News Article: “In Memory of Dr. Kwaku Ohene-Frempong”

The Sickle Cell Disease Association of America (SCDAA) recently published an article honoring the life of Dr. Kwaku Ohene-Frempong (KOF), an impactful leader in the global sickle cell community. Originally from Ghana, KOF was a professor of pediatrics and Director Emeritus of the comprehensive Sickle Cell Centre at the Children’s Hospital of Philadelphia. Learn more here. 

ASGCT Clinical Trials Finder

The American Society of Gene & Cell Therapy (ASGCT) website includes a clinical trials finder, which offers a curated list of applicable gene and cell therapy clinical trials for people living with diseases, like sickle cell. Individuals may filter their search by location, specific diagnosis, treatment modality, or enrollment status. Learn more here.

St. Jude Children’s Research Hospital “Transition Skills for Teens with SCD” Toolkit

St. Jude Children’s Research Hospital created a new “Transition Skills for Teens with SCD” toolkit to aid SCD warriors moving from pediatric to adult medical care. This virtual toolkit provides educational videos on topics like how to make an appointment with an adult doctor, understanding health insurance, and more. Learn more here. 

IASCNAPA: Scholarship Program for SCD Warriors

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) has established a college scholarship program to assist individuals living with sickle cell disease (SCD) who will be attending an institution of higher learning in the United States. Applicants for IASCNAPA’s scholarships must be enrolled in or have been accepted by a recognized and accredited post- secondary school, including college, university, trade school, or other institution of higher learning in the US. Learn more here. 

AABB News Article: “Diversity in the Blood Donor Pool Protects Patients in Need of Rare Blood” 

The Association for the Advancement of Blood & Biotherapies (AABB) recently published an article highlighting the need for a diverse blood donor pool. The article states that identifying, recruiting, and engaging rare donors are all necessary to ensure there is a sufficient blood supply for people living with rare diseases, wherever and whenever they need a transfusion. Read the article here. 

AMA Resource for Health Care Workers: “Managing Mental Health during COVID-19”

The American Medical Association (AMA) released its “Managing Mental Health during COVID-19” webpage. This resource highlights strategies and resources to help physicians to care for their own mental well-being while also caring for patients during the pandemic or any other crisis. Learn more here. 

CDC Sickle Cell Disease Digital Toolkit

In recognition of World Sickle Cell Day, the Centers for Disease Control and Prevention (CDC) released a digital toolkit to help spread awareness of SCD in recognition of World Sickle Cell Day. The toolkit includes shareable graphics, sample social media posts highlighting the voices of SCD warriors, trivia, and more. Access the toolkit here. 

Access ASH’s Pocket Guides on SCD

The American Society of Hematology (ASH) has developed a series of brief, evidence-based pocket guides to help physicians provide quality care to individuals living with rare hematologic diseases, like sickle cell. The SCD pocket guides cover topics such as management of acute complications, hydroxyurea and transfusion therapies, and more. Learn more here. 

Binge All Episodes from Season 1 of ASH’s New SCD Podcast 

ASH launched its first podcast on SCD, hosted by Dr. Wally Smith, Florence Neal Cooper Smith Professor of Sickle Cell Disease School of Medicine, Division of General Medicine, Virginia Commonwealth University. Listen to the entire first season of “Bringing Sickle Cell Disease to Life,” as he explores the history, disparities and bias of this disease, and shares promising news in the management and treatment of sickle cell. Learn more here. 

New NMDP Be The Match Sickle Cell Warrior Fertility Preservation Grant Pilot

The National Marrow Donor Program (NMDP) Be The Match recently announced the launch of a Sickle Cell Warrior Fertility Preservation Grant pilot. The goal of this grant is to fill a gap in insurance coverage and philanthropic dollars that will allow more warriors the opportunity to get to transplant and build their own families post-transplant. Please reach out to the Patient Financial Assistance team at patientgrants@nmdp.org to apply. 

Sick Cells Roadmap of Resources for SCD Caregivers

Sick Cells, in partnership with the Caregiver Action Network (CAN), developed a “Roadmap of Resources” to help sickle cell caregivers improve their quality of life and manage stress. These resources were compiled to help address the common challenges and barriers caregivers face. Learn more here. 

Orlando Sentinel Article: “Florida Mom Donates Stem to Cure 7-Year-Old Sons of SCD”

The Orlando Sentinel recently published an article entitled “Florida Mom Donates Stem Cells to Cure 7-Year-Old Sons of SCD.” This article highlights the story of Marelyn Salgado, a Honduran mother who underwent a bone marrow cell donation procedure saving the lives of her twin sons born with SCD. Read the article here. 

NHLBI Publication: “Sickle Cell Disease: Milestones in Research & Clinical Progress”

The National Heart, Lung, and Blood Institute (NHLBI) released a resourced entitled, “Sickle Cell Disease: Milestones in Research & Clinical Progress.” NHLBI-supported research helped make key scientific discoveries possible, and, over the years, the NHLBI has continued to advance the understanding of SCD and improve clinical care. Learn more here. 

ACOG Resource: “Carrier Screening for Hemoglobinopathies”

The American College of Obstetricians and Gynecologists (ACOG) developed its “Carrier Screening for Hemoglobinopathies” resource to aid individuals with their family planning journeys. This resource defines the carrier screening process, SCD, thalassemia, and more. Learn more here. 

**SCD EVENTS**

PerkinElmer WHA Virtual Side Event: “Saving the Lives of Mothers and Babies: “What More Should We Do?” 

Perkin Elmer will hold a World Health Assembly (WHA) side event webinar entitled, “Saving the Lives of Mothers and Babies – What More Should We Do?” The program will take place on May 19, 2022, from 6:00am-8:15am ET, and will bring together policymakers, patients, clinicians, and more to discuss policy actions and recommendations to improve maternal newborn and child health (MNCH) outcomes. Register to attend here. 

1st GASCDO Global Conference: “The Future of Sickle Cell Care in a Changing World”

The Global Alliance of SCD Organizations (GASCDO) is hosting its first global conference from May 20 to May 22, 2022. The conference’s theme is, “The Future of Sickle Cell Care in a Changing World.” Register to attend here. 

SCAGO Clinical Trials & Transplantation in Sickle Cell Disease Webinar

The Sickle Cell Awareness Group of Ontario (SCAGO) is hosting a webinar on the current state of SCD-related clinical trials in Canada on May 28, 2022, from 10:00am -12:00pm ET. The program will feature a panel of experts, including individuals who have experienced bone marrow transplants (BMT) to cure SCD. Register to attend here. 

FSCDR 16th Annual SCD Research and Educational Symposium and 45th National Sickle Cell Disease Scientific Meeting

The Foundation for Sickle Cell Disease Research (FSCDR) will hold its 16th Annual SCD Research and Educational Symposium and 45th National Sickle Cell Disease Scientific Meeting as a hybrid event from June 10 to June 12, 2022. This educational symposium will consist of plenary sessions on healthcare access, SCD legislation progress, gene therapy, and more. Learn more here. 

CDC & ACEP Webinar: “Breaking Down Barriers to Emergency Department Care for People with SCD”

Join the Centers for Disease Control and Prevention (CDC) and the American College of Emergency Physicians (ACEP) for a panel discussion between people living with SCD, an emergency physician, and a representative from CDC on the impacts and effects of the disease on care in the ED. The program will take place on June 16, 2022. Attend to take a deeper dive into what it’s like to live with SCD and how you can improve your practice. Learn more here. 

4th GSCDN Global Congress on SCD 

The Global Sickle Cell Disease Network (GSCDN) is holding the 4th Global Congress on Sickle Cell Disease. The event will take place from June 16-18, 2022, in Paris, France. The Congress will bring together sickle cell disease (SCD) stakeholders from various sectors, including clinicians, scientists, patients, and more to catalyze discussions around the achievements and challenges in the diagnosis, treatment and care of people living with SCD globally, as well as the prospects for further progress. Learn more here

**SCD & COVID-19 RESOURCES** 

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