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Thank You for Stopping By! 

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SCDAI's News You Can Use Letter(s) (NewsLetters)
Click below to view & Stay Informed! 


September 2024
August 2024

June 2024
May 2024
 

Current Sickle Cell Disease Treatment Options
(Click on each one below to learn more!)

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Hydroxyurea, Hydrea, HU, Droxia)

Ages 2 & Over

Bristol Myers Squibb

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Lyfgenia (Gene Therapy)

Ages 12 & over

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Endari-(L-glutamine)

Ages 5 & Over

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Adakveo-(Crizanlizumab-tmca)

Ages 16 & Over

Current Treatment Guidelines

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2020

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action

Sickle cell disease (SCD) is a genetic condition that affects approximately 100,000 people in the United States and millions more globally. Individuals with SCD endure the psychological and physiological toll of repetitive pain as well as side effects from the pain treatments they undergo. Some adults with SCD report reluctance to use health care services, unless as a last resort, due to the racism and discrimination they face in the health care system. Additionally, many aspects of SCD are inadequately studied, understood, and addressed.

Addressing Sickle Cell Disease examines the epidemiology, health outcomes, genetic implications, and societal factors associated with SCD and sickle cell trait (SCT). This report explores the current guidelines and best practices for the care of patients with SCD and recommends priorities for programs, policies, and research. It also discusses limitations and opportunities for developing national SCD patient registries and surveillance systems, barriers in the healthcare sector associated with SCD and SCT, and the role of patient advocacy and community engagement groups.

Support Groups

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Statewide Support Group

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Join Our Sickle Cell GroupMe Support
(App on your cell  phone or computer)

  • GroupMe for Adult(s) with Sickle Cell Disease Only-Click to Join

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  • GroupMe for Caregivers of Individuals with Sickle Cell Disease Only-Click To Join

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Special Thanks to our partners at Blue Cross Blue Shield of Illinois (BCBSIL)
for the lighting of the building in recognition of Sickle Cell Awareness Month 2023 & 2024!

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This Community NEEDs YOU!

There is a CURE for Sickle Disease Patients who have a match! You could be the cure for an individual living with Sickle Cell Disease!
 
Click below to JOIN the Be The Match donor registry with a simple CHEEK SWAB!

Do you know that Transfusions are one of the major treatments for Sickle Cell Patients? Do you know that blood donations are low and Sickle Cell patients sometimes cannot receive blood?

Your Blood Is needed! Please Donate Blood, Host a Blood Drive or come out to one of our Blood Drives!

Individuals with Sickle Cell Disease please Click below to connect to
FREE resources and tools!

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Other ways you Can Help!

Raising Awareness In The Sickle Cell CommUNITY

This code is only good in Federal campaigns

 

# 79914

Employee giving campaign season is underway and many public sector campaigns, including the Combined Federal Campaign (CFC), have kicked off.

 

You can participate in CFC campaigns throughout the country with your local Community Health Charities Affiliate.  this number no matter where you are located in the world.

Be an advocate in your local community!

  • Participate in health fairs

  • Schedule an education session

  • Be apart of advocacy efforts

  • Increase community financial support

  • Gather a team, register and participate in our Annual WJBAT

  • Collect toys and gift cards for our Annual Toy Drive

  • Did you know there is a Sickle Cell Disease Association of America (SCDAA) located in Baltimore, MD?

  • Did you know there are over 60 member organizations across the United States?

 

Stay up to date with what's going on on a National level for Sickle Cell!

www.sicklecelldisease.org 

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