{"id":5392,"date":"2018-07-09T14:28:30","date_gmt":"2018-07-09T20:28:30","guid":{"rendered":"https:\/\/scda.dojiggyengage.com\/?page_id=400"},"modified":"2024-08-19T16:24:23","modified_gmt":"2024-08-19T16:24:23","slug":"links-resources","status":"publish","type":"page","link":"https:\/\/www.sicklecelldisease.org\/links-resources\/","title":{"rendered":"Links &#038; Resources"},"content":{"rendered":"<h2>Watch<\/h2>\n<ul>\n<li><a href=\"https:\/\/www.youtube.com\/watch?v=F4y9uN6TGwA\">#BelieveIt PSA<\/a><\/li>\n<li><a href=\"https:\/\/vimeo.com\/762730325\">You Gotta Rise Music Video<\/a><\/li>\n<\/ul>\n<h2>SCDAA Medical Research &amp; Advisory Committee<\/h2>\n<ul>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/2022\/10\/19\/marac-encourages-clinical-research-studies\/\">Clinical Trials<\/a><\/li>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/2022\/08\/31\/marac-advisory-statement-immunizations\/\">Immunizations<\/a><\/li>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/2022\/07\/20\/marac-advisory-statement-monkeypox\/\">Monkeypox<\/a><\/li>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/2021\/05\/20\/marac-statement-on-gene-therapy-bone-marrow-therapies\/\">Gene Therapy and Bone Marrow Therapy<\/a><\/li>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/2020\/03\/17\/health-alert-for-patients-and-caregivers\/\" target=\"_blank\" rel=\"noopener noreferrer\">COVID-19 Health Alert for Patients and Caregivers<\/a><\/li>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/2020\/03\/18\/sickle-cell-disease-and-covid-19-provider-directory\/\" target=\"_blank\" rel=\"noopener noreferrer\">COVID-19 Provider Advisory<\/a><\/li>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/2020\/12\/15\/marac-advisory-statement-covid-19-vaccines\/\">COVID-19 Vaccines<\/a><\/li>\n<\/ul>\n<h2>COVID-19 Resources<\/h2>\n<ul>\n<li><a href=\"https:\/\/www.facebook.com\/sicklecellcampaign\/posts\/4238537179504443?fbclid=IwAR3XWfSvq6nzHQtJYxjIpST7c-MoYCWoRn2NaQXqFYAcwE-emr5bcyW6wcE\">VAX FACTS: Real Talk About Sickle Cell &amp; the COVID-19 Vaccine<\/a><\/li>\n<li><a href=\"https:\/\/www.greaterthancovid.org\/theconversation\/?utm_source=betweenusaboutus.org&amp;utm_medium=vanity%20url\/&amp;fbclid=IwAR1SM_0CXFbdLi1AR1Od96ZmoABs4GH5wt1yJzyyBihhzQnf7Y_S0vbikk8\">Greater Than COVID &#8211; The Conversation<\/a><\/li>\n<li><a href=\"https:\/\/www.cdc.gov\/coronavirus\/2019-ncov\/vaccines\/toolkits.html\">COVID-19 Vaccination Toolkits<\/a><\/li>\n<li><a href=\"https:\/\/www.cdc.gov\/coronavirus\/2019-ncov\/communication\/toolkits\/older-adults-and-people-at-higher-risk.html\">COVID-19 Toolkit for Older Adults &amp; People at Higher Risk<\/a><\/li>\n<li><a href=\"https:\/\/www.cdc.gov\/coronavirus\/2019-ncov\/vaccines\/index.html\">COVID-19 Vaccine<\/a><\/li>\n<li><a href=\"https:\/\/www.dropbox.com\/scl\/fi\/arsxqbqeql7xljwhmnkp5\/CDC-CBO-Worker-PPT_D-sickle-cell-002.pptx?dl=0&amp;rlkey=fsx7xzvbcpibg6ep3f28mvarn\">COVID-19 CDC CBO Slide Deck<\/a><\/li>\n<\/ul>\n<h2>Surveys &amp; Studies<\/h2>\n<ul>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/the-hibiscus-study\/\">The Hibiscus Study<\/a><\/li>\n<li><a href=\"http:\/\/www.momentumtrials.com\/\">Momentum Clinical Study\u00a0<\/a><\/li>\n<li><a href=\"http:\/\/www.onescdvoice.com\">oneSCDVoice<\/a><\/li>\n<\/ul>\n<h2>Disability Issues<\/h2>\n<ul>\n<li><a href=\"https:\/\/www.accreditedschoolsonline.org\/resources\/parents-students-disabilities\/\" target=\"_blank\" rel=\"noopener noreferrer\">Community for Accredited Online Schools<\/a><\/li>\n<li><a href=\"http:\/\/www.dol.gov\/odep\/\" target=\"_blank\" rel=\"noopener noreferrer\">Employment of People with Disabilities<\/a><\/li>\n<li><a href=\"http:\/\/www.ncd.gov\/\">National Council on Disability<\/a><\/li>\n<\/ul>\n<h2>Educational Materials<\/h2>\n<ul>\n<li><a href=\"http:\/\/www.scdcoalition.org\/report.html\">2020 Report Card on the State of Sickle Cell Disease<\/a><\/li>\n<li><a href=\"https:\/\/www.nap.edu\/catalog\/25632\/addressing-sickle-cell-disease-a-strategic-plan-and-blueprint-for\">Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action<\/a><\/li>\n<li><a href=\"https:\/\/bethematch.org\/patients-and-families\/support-for-you-and-your-family\/one-on-one-support\/counseling-services\/\">Be The Match Patient Support Center <\/a><\/li>\n<li><a href=\"https:\/\/www.sparksicklecellchange.com\/#utm_source=scdaa&amp;utm_medium=promoted_link&amp;utm_campaign=resources_page_link\">Be the Spark &#8211; Sickle Cell Disease Education Website<\/a><a href=\"https:\/\/scdaa-e-store.myshopify.com\/collections\/downloads\/products\/copy-of-scd-national-awareness-ribbon\"><\/a><\/li>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/wp-content\/uploads\/2021\/02\/H-1568-Blood-Donor-Month-Flyer_HI.pdf\">Diverse Blood Donation Facts<\/a><\/li>\n<li><a href=\"https:\/\/www.cdc.gov\/ncbddd\/sicklecell\/materials\/index.html\">CDC Materials and Multimedia<\/a><\/li>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/2023\/10\/26\/cdc-scd-pregnancy-fact-sheets\/\">CDC SCD Pregnancy Fact Sheets<\/a><\/li>\n<li><a href=\"https:\/\/www.cdc.gov\/ncbddd\/sicklecell\/betterhealthtoolkit\/index.html?s_cid=ncbddd_sc_bht_part_2021-04\">CDC \u201cSteps to Better Health for People with Sickle Cell Disease\u201d Toolkit\u00a0<\/a><\/li>\n<li><a href=\"https:\/\/www.hematology.org\/covid-19\/sickle-cell-disease-er-checklist\" target=\"_blank\" rel=\"noopener noreferrer\">Checklist for SCD Patients Presenting to the Emergency Department During the Pandemic<\/a><\/li>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/wp-content\/uploads\/2021\/07\/Gene-Therapy-Town-Hall.pdf\">Gene Therapy Town Hall Infographic<\/a><\/li>\n<li><a href=\"https:\/\/www.youtube.com\/watch?v=J77Gq9yIuY0\">Gene Therapy Town Hall Recording<\/a><\/li>\n<li><a href=\"https:\/\/www.kidneycancer.org\/know-and-tell\/\">KNOW &amp; TELL: SCT and RMC Resource<\/a><\/li>\n<li><a href=\"https:\/\/www.nccih.nih.gov\/news\/events\/approaches-to-effective-therapeutic-management-of-pain-for-people-with-sickle-cell-disease\">NIH July 2021 Workshop on SCD Recordings<\/a><\/li>\n<li><a href=\"https:\/\/www.nhlbi.nih.gov\/resources\/sickle-cell-disease\">NIH NHLBI Sickle Cell Disease Fact Sheet (English)<\/a><\/li>\n<li><a href=\"https:\/\/www.nhlbi.nih.gov\/resources\/enfermedad-de-celulas-falciformes-sickle-cell-disease\">NIH NHLBI Sickle Cell Disease Fact Sheet (Spanish)<\/a><\/li>\n<li><a href=\"https:\/\/www.onescdvoice.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">oneSCDVoice<\/a><\/li>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/wp-content\/uploads\/2020\/09\/SCD-Transition-Family-HCT-TOOLKIT.pdf\">Pediatric-to-Adult Health Care Transition Family Toolkit<\/a><\/li>\n<li><a href=\"https:\/\/cdn.pfizer.com\/pfizercom\/CFCReport.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">The Sickle Cell Disease Council For Change Releases its first report: Improving Vaso-occlusive Crisis Management<\/a><\/li>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/wp-content\/uploads\/2019\/10\/Sickle-Cell-Resources_2019_HPC-1.pdf\">Sickle Cell Books from Hilton Publishing<\/a><\/li>\n<li><a href=\"https:\/\/scinfo.org\/\">Sickle Cell Information Center<\/a><\/li>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/wp-content\/uploads\/2020\/09\/SCD-Hearing-Impaired-Communicating-with-Docs-Training.pdf\">Talking with Doctors Training<\/a><\/li>\n<\/ul>\n<h2>Medical Links<\/h2>\n<ul>\n<li><a href=\"http:\/\/www.sicklecelldisease.net\/\" target=\"_blank\" rel=\"noopener noreferrer\">SCDAA Sickle Cell Disease Educational Information Repository<\/a><\/li>\n<li><a href=\"http:\/\/www.hematology.org\">American Society of Hematology<\/a><\/li>\n<li><a href=\"https:\/\/www.cdc.gov\/ncbddd\/sicklecell\/index.html\">Centers for Disease Control<\/a><\/li>\n<li><a href=\"http:\/\/www.scinfo.org\/\">E<\/a><a href=\"http:\/\/www.scinfo.org\/\">mory U<\/a><a href=\"http:\/\/www.scinfo.org\/\">niversity Sickle Cell Information Center<\/a><\/li>\n<li><a href=\"https:\/\/iapediatricstroke.org\/\">International Alliance for Pediatric Stroke<\/a><\/li>\n<li><a href=\"http:\/\/www.transplants.org\/\">National Foundation for Transplants<\/a><\/li>\n<li><a href=\"http:\/\/www.marrow.org\/\">National Marrow Donor Program<\/a><\/li>\n<li><a href=\"https:\/\/rarediseases.org\" target=\"_blank\" rel=\"noopener noreferrer\">National Organization for Rare Disorders<\/a><\/li>\n<li><a href=\"https:\/\/uspainfoundation.org\/\">U.S. Pain Foundation<\/a><\/li>\n<li><a href=\"http:\/\/www.yourgenesyourhealth.org\/\">Your Genes, Your Health<\/a><\/li>\n<\/ul>\n<h2>Online SC Communities<\/h2>\n<ul>\n<li><a href=\"https:\/\/raremark.com\/sickle-cell-disease\">Raremark<\/a><\/li>\n<li><a href=\"https:\/\/www.onescdvoice.com\/\">oneSCDvoice<\/a><\/li>\n<\/ul>\n<h2>Resource Directory<\/h2>\n<ul>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/wp-content\/uploads\/2020\/02\/SCD-National-Resource-Directory_020720.pdf\">CDC National Resource Directory<\/a><\/li>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/wp-content\/uploads\/2020\/02\/ATC-2019-Monograph_final.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">2018 and 2019 Access-to-Care Summits<\/a><\/li>\n<\/ul>\n<h2>School Information<\/h2>\n<ul>\n<li><a href=\"https:\/\/www.sicklecelldisease.org\/wp-content\/uploads\/2019\/06\/SickleCellDiseaseGuidelines-1.pdf\">Management of Sickle Cell Disease in Schools<\/a><\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>Watch #BelieveIt PSA You Gotta Rise Music Video SCDAA Medical Research &amp; Advisory Committee Clinical Trials Immunizations Monkeypox Gene Therapy and Bone Marrow Therapy COVID-19 Health Alert for Patients and Caregivers COVID-19 Provider Advisory COVID-19 Vaccines COVID-19 Resources VAX FACTS: Real Talk About Sickle Cell &amp; the COVID-19 Vaccine Greater Than COVID &#8211; The Conversation [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":2179,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-5392","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v24.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Links &amp; Resources - Sickle Cell Disease Association of America Inc.<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.sicklecelldisease.org\/links-resources\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Links &amp; 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