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Resource Library

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Sickle Cell 101

Sickle Cell 101

  • Complications
    • sickle-cell-blood-clots-h.pdf
    • sickle-cell-caring-for-common-complications-h.pdf
    • sickle-cell-heart-health-h.pdf
    • sickle-cell-lung-health-h.pdf
  • General Knowledge
    • SCD Screening Process
      • Factsheet_SickleCell_Status.pdf
      • Sickle-Cell- get screened.pdf
    • SCD Types
      • SCD Hemoglobin S.pdf
    • Self-Care
      • AmericanHeartAssoc_25_Ways_to_Get_Moving_at_home.pdf
      • LivingWell-With-Sickle-Cell-Disease_Self-CareToolkit.pdf
    • What is SCD
      • NHLBI Sickle Cell Timeline 2010.pdf
      • SCDFactSheets-Finalflyers.pdf
      • SickleCell-2.pdf
    • What is the Sickle Cell Trait
      • Sickle Cell Trait (AS).pdf
      • Sickle Cell Trait and Hematuria.pdf
      • Sickle Cell Trait and Splenic Infarct.pdf
      • sickle-cell-Team Doctors (and Trainers).pdf
      • sickle-cell-athletes.pdf
      • sickle-cell-coaches.pdf
  • How Living with SCD Affects…(Pain Management-Nutrition-College-Care-etc.)
    • Access to Quality and Affordable Care
      • Racism_Inequality_Healthcare_AfricanAmerican.pdf
      • SickleCellDisease-HealthDisparities-FactSheet021618.pdf
    • College Bound with SCD
      • 9 Tips to Living Well with SCD in College.pdf
    • Complications
      • Acute Chest Syndrome
        • Sickle_Cell_Acute_Chest_Syndrome_ACS.pdf
      • Infection
        • 5 Tips to help prevent infection.pdf
      • Iron Overload
        • SCD Iron Overload.pdf
    • Hospital Care
      • ER Visits
        • Patient-centered ER management strategy - Medical Home section of Health Care Providers.pdf
        • What to Know before you go to the ER.pdf
        • goinghomeguide.pdf
    • Nutrition
      • Nutrition Hope and Destiny Jr excerpt 2019.pdf
      • Nutrition for the Child with Sickle Cell Anemia.pdf
      • Nutrition-in-sickle-cell-disease-recent-insights.pdf
    • Pain Management
    • Traveling with SCD
      • Traveling with Sickle Cell Disease.pdf
    • Treatment Options
      • Blood Transfusions
        • Red Blood Cell Transfusion for SCD.pdf
      • Bone Marrow Transplant
      • Medications
        • Endari - Pharmaceutical Approval Update.pdf
        • FDA approves first targeted therapy to treat patients with painful complication of sickle cell disease.pdf
        • Hydroxyurea treatment for SCD.pdf
        • Oxbryta (Voxelotor) - Sickle Cell Disease News.pdf
    • Working with SCD
      • Accommodation and Compliance_Sickle Cell Anemia.pdf

SCD Warrior (Health Resources)

SCD Warrior (Health Resources)

  • Adolescent
    • genes-for-teens-with-sickle-cell-disease.pdf
  • Adult
    • Men with SCD
      • Priapism and sickle cell disease.pdf
    • Reproductive Health
      • Contraception and Conception
        • Birth Control Choices.pdf
        • FAQs on Birth Control.pdf
        • genes-for-parents-of-teens-with-scd.pdf
      • Pregnancy
        • Sickle Cell Disease and Pregnancy.pdf
        • What You Should Know about Sickle Cell Disease and Pregnancy_English.pdf
        • What You Should Know about Sickle Cell Disease and Pregnancy_French.pdf
        • What You Should Know about Sickle Cell Disease and Pregnancy_Spanish.pdf
    • Women with SCD
      • Fact sheet for women with sickle cell disease.pdf
  • Child
    • A Parents Guide for the School Aged Child_English.pdf
    • A Parents Guide for the School Aged Child_Spanish.pdf
    • A Parents Guide to Sickle Cell Disease.pdf
    • Planning School Accommodations and Modifications guide.pdf
    • SCD Nurse Donna Me (pdf).pdf
    • The Bear Necessities of Sickle Cell coloring book.pdf
    • brochure-child-print.pdf
  • Gene Therapy
    • H - 5788 - Brochure Resize - Gene Therapy_HI.pdf
  • Geriatrics
    • Sickle Cell Disease in the Older Adult.pdf
  • Infant
    • A Parents Guide for the Infant and Young Child_English.pdf
  • Mental and Behavioral Health
    • Roadmap-to-Behavioral-Health-Updated-2019.pdf
    • virtual-recovery-resources.pdf
  • Substance Abuse
    • 13-Principles-of-Effective-Treatment.pdf
    • Drug-Guide-for-Parents.pdf
    • Substance-Use-Mental-Health-in-Teens-and-Young-Adults.pdf
    • questions_to_ask_treatment_programs_and_staff.pdf
  • Transitioning to Adulthood
    • Differences-in-Care.pdf
    • Differences-in-Care_SPANISH.pdf
    • Generation S Transition Booklet.pdf
    • Health Care Privacy at Age 18 - FINAL.pdf
    • Health Care and Career Transition QuickGuide_508.pdf
    • Healthcare-Transition.pdf
    • Healthcare-Transition_Spanish.pdf
    • How-Well-Do-You-Know-Your-Health-Care-Needs.pdf
    • How-Well-Do-You-Know-Your-Health-Care-Needs_SPANISH.pdf
    • Pediatric Vs Adult Care v11.pdf
    • SCD - Transition Family HCT TOOLKIT.pdf
    • Sickle Cell Disease and the Social Security Disability Evaluation Process.pdf
    • Turning-18 Spanish FINAL.pdf

Provider (MD/DO/DDS/Clinical Psychologist/Clinical Psychiatrist/Nurses)

Provider (MD/DO/DDS/Clinical Psychologist/Clinical Psychiatrist/Nurses)

  • Clinical Psychiatrist
  • Clinical Psychologist
  • DDS
  • MD
    • Sickle_Cell_MD Providers.pdf
    • sickle-cell-diabetes-HC-provid.pdf
  • Nurses
    • tipsheet_Supporting_Students_with_SCD Nurses.pdf

Non-Medical Providers (CHWS/Health Navigators)

Non-Medical Providers (CHWS/Health Navigators)

  • CHW brochure
    • CHW Brochure
  • CHW-Health Navigator
    • C3 Project.pdf
    • Code of Ethics.pdf
    • Corder Mabe JCEHP 2019.pdf
    • chw_advocacy_toolkit.pdf

Caretaker (Parent/Teacher/Daycare Provider/etc.)

Caretaker (Parent/Teacher/Daycare Provider/etc.)

  • Daycare-Summer Camp provider servicing a patient with SCD
    • childcare.pdf
  • Family Member of a Patient with SCD
    • A-Parents-Guide-To-Managing-Sickle-Cell-Disease.pdf
    • Children_Sickle_Cell_Books.docx
    • DS-18231 SCD and Pediatric Stroke infographic.pdf
    • SCD and Pediatric Stroke infographic 1.jpg
    • SCD and Pediatric Stroke infographic 2.jpg
  • Games for patients with SCD
    • Instructions.pdf
  • Steps to Better Health for People with Sickle Cell Disease Toolkit
    • DS-18231 SCD and Pediatric Stroke infographic.pdf
    • SCD and Pediatric Stroke infographic 1.jpg
    • SCD and Pediatric Stroke infographic 2.jpg
    • sickle-cell-3-tips-safe-med-use-h.pdf
    • sickle-cell-blood-clots-h.pdf
    • sickle-cell-caring-for-common-complications-h.pdf
    • sickle-cell-heart-health-h.pdf
    • sickle-cell-kidney-health-h.pdf
    • sickle-cell-lung-health-h.pdf
  • Teacher serving a student with SCD
    • A-Guide-to-School-Policy-June-2016-00000002.pdf

Research (Data and News in the SCD Community)

Research (Data and News in the SCD Community)

  • Data and News in the SCD Community
    • Current challenges in the mgmt of patients with SCD - Italian experience.pdf
    • Oshsner Journal_Sickle Cell Disease_Advances in Treatment.pdf
    • QA Dr. Tisdale 4-6-19(FINAL).docx
    • SCDFactSheets-Finalflyers.pdf
    • SickleCellDiseaseAnnual Data Reports&Facts_Jan2020.pdf
    • What is the Cure Sickle Cell Initiative (CureSCi)_.mp4
  • SCD Access to Care White Paper-SCDAA .pdf

SCD Patient Resources (Mentoring/Advocacy/SCDAA Initiatives)

SCD Patient Resources (Mentoring/Advocacy/SCDAA Initiatives)

  • Advocacy
    • SAVE THE DATE-ADVOCACY INSTITUTE 2020 (2).pdf
  • Mentoring
    • Mentee Sickle Cell Disease Association of America, Inc., Peer Mentor Training Program (6).pdf
    • Sickle Cell Disease Association of America, Inc., Peer Mentor Training Program (7).pdf

P.O.W.E.R. ECHO Project

P.O.W.E.R. ECHO Project

  • member organization Session - How to Successfully Manage a Newborn Screening Program_11_16_2020.mp4
  • Cultural Humility.mp4
  • Documenting Eligible Support Services.mp4
  • HQI ECHO.mp4
  • How Do We Approach Racism In The Care of Our Clients.mp4
  • Impacts of Covid on CHWs.mp4
  • Managing a Nonprofit for Sickle Cell Disease patients.mp4
  • Mental & Behavioral Health Issues.mp4
  • Nutrition & SCD.mp4
  • Retaining CHWs.mp4
  • Session CHWs, SCD patients, & Hospital Relationships.mp4
  • Staying Motivated & Encouraged.mp4
  • Telehealth101.mp4
  • Undocumented Individuals With Sickle Cell Disease.mp4

COVID-19 Resources

COVID-19 Resources

  • CCP EUA FS Recipeints.2.4.21_FINAL VERSION FOR CONCURRENCE_0.pdf
  • EUA 91 Patient FS PEP Spanish.pdf
  • EUA 91 Patient FS Post Exposure Prophylaxis Final 7_30_2021.pdf
  • FAQs_EUA bamlanivimab and etesevimab 12 3 21.pdf
  • Vaccine Information.pdf

Blood Drive Resources

Blood Drive Resources

  • Blood Donor Fact 1.jpg
  • Blood Donor Fact 2.jpg
  • Blood Donor Month Flyer

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