Sickle Cell News

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World Sickle Cell Day

In 2008, the United Nations officially designated June 19 as World Sickle Cell Awareness Day. 

The international awareness day is observed annually alongside Juneteenth. The goal of World Sickle Cell Day is to increase public knowledge and an understanding of sickle cell disease, and the challenges experienced by patients and their families and caregivers.

This year’s global theme is “Hope Through Progress: Advancing Care Globally.” Read a statement from the Global Alliance of Sickle Cell Disease Organizations (GASCDO) on this important topic.

Sickle cell in Minnesota

Learn more about who is impacted by sickle cell disease in Minnesota: A Snapshot of Sickle Cell Disease and Sickle Cell Trait in Minnesota (PDF). 

959 people live with sickle cell disease in Minnesota. Most Minnesotans with SCD are under 50 years of age. View the PDF to learn more. 

There are 959 people living with SCD in Minnesota and most Minnesotans with SCD are under 50 years of age.

Sickle Cell Foundation of Minnesota events

What: More than our sickle cell: a global community conversation

When: Thursday, June 13, 6 p.m.

Where: online

Register for the community conversation.

What: Warrior meet and greet (health care professionals are welcome to register and attend)

When: Wednesday, June 19, 6:30-8 p.m.

Where: Dave & Buster’s Edina, MN

Register for Dave and Buster’s event.

What: Slow Roll for Sickle Cell

When: Saturday, June 22, check-in starts at 7:30 a.m.

Where: Venture Bikes in the Midtown Greenway Minneapolis, MN

Register for the Slow Roll for Sickle Cell.

What: Sickle cell empowerment circle (virtual)

When: Fourth Wednesday at 6 p.m. (upcoming dates: June 26 and July 25)

Where: online

Register for the sickle cell empowerment circle.

What: Smart wellness workshop provides practical tools that support overall well-being and resilience.

When: Wednesday, July 10

Where: online

Topic: The struggle is real: finding healthy coping strategies

Register for the wellness workshop.

Don't forget to subscribe to Sickle Cell Foundation of Minnesota's YouTube Page

Topics: Living Sickle SMART sessions such as Curative Therapies in Sickle Cell Disease (SCD), Priapism in Men with SCD, Kidney Health for Sickle Cell Trait Warriors, and More Than Our Sickle Cell: A Global Community Conversation.

Watch recorded videos.

Upcoming trainings and webinars

STORM TeleECHO

STORM TeleECHO will empower health care providers to develop the skills, knowledge, and confidence to manage pediatric and adult patients with sickle cell disease (SCD) using evidence-based best practices.

Register here for upcoming STORM TeleECHO sessions.

National Alliance of Sickle Cell Centers (NASCC) annual SCD centers meeting & consensus conference 

NASCC strives to be the leading organization in clinical practice in sickle cell disease including recognizing and supporting sickle cell disease centers who deliver multi-disciplinary care for affected individuals.

• When: July 28 – August 1
• Where: Minneapolis Marriot City Center

Learn more and register for the NASCC event.

Save the dates

The next Sickle Cell Data Collection Multidisciplinary Team meeting is October 3, 12:30 - 2 p.m. 

The 52nd SCDAA Annual National Convention will be held October 23-26 in Atlanta, Georgia! Be sure to set aside the dates to join for a week of education, connection, and collaboration. Stay tuned for more details!

Abstracts are due by June 15.

In the News

• A New Day for Sickle Cell Patients | Commonwealth Fund
• 10-year-old girl uses literature to fight sickle cell disease, educate families (tmj4.com)
• First Patient Begins Sickle Cell Gene Therapy That F.D.A. Approved - The New York Times (nytimes.com)

Publications

• Birth Prevalence of Sickle Cell Disease and County-Level Social Vulnerability — Sickle Cell Data Collection Program, 11 States, 2016–2020 | MMWR (cdc.gov)
• Gaps during Pediatric to Adult Care Transfer Escalate Acute Resource Utilization in Sickle Cell Disease | Blood Advances | American Society of Hematology (ashpublications.org)
• ICER and NEWDIGS Release White Paper Analyzing the Challenges and Potential Policy Options for Paying for Gene Therapies - ICER
• Immunization adherence among children with sickle cell disease and sickle cell trait: Results of a population-based study - PubMed (nih.gov)
• Acute care utilization among individuals with sickle cell disease and related cardiopulmonary and renal complications - PubMed (nih.gov)
• Assessing Patterns of Telehealth Use Among People with Sickle Cell Disease Enrolled in Medicaid During the Start of the COVID-19 Pandemic - PubMed (nih.gov)

Other Resources

American Society of Hematology (ASH) Sickle Cell Disease Coalition

• The Sickle Cell Disease Coalition is composed of public health, research, and provider organizations, patient groups, faith-based organizations, federal agencies, industry representatives, and foundations with an interest in Sickle Cell Disease. 

The Sickle Cell Disease Association of America (SCDAA)

• SCDAA advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. 
• SCDAA and Forma Therapeutics produced an impactful PSA that shows what SCD crises look like so more people can take action. Watch the video. 

NMDP – Sickle Cell Connect

• Sickle Cell Connect aims to connect sickle cell warriors with the resources and support to learn more about sickle cell disease and empower your treatment options. 

SCDAA and MedicAlert Program

• During a sickle cell pain crisis, time is of the essence. SCDAA and MedicAlert have launched a pilot program designed to improve the emergency room.

Interested in sharing updates in the newsletter? Email Amanda Maresh at amanda.maresh@state.mn.us 

The SCDC program is funded by the Centers for Disease Control and Prevention, DD-23-0002 Sickle Cell Data Collection Program, Award Number NU58DD000031.

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