Your mental health and gene therapy

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.interior::after { background: -webkit-linear-gradient(90deg, rgba(0,0,0,0.4) 0%, rgba(0,0,0,0) 55%); background: -moz-linear-gradient(90deg, rgba(0,0,0,0.4) 0%, rgba(0,0,0,0) 55%); background: linear-gradient(90deg, rgba(0,0,0,0.4) 0%, rgba(0,0,0,0) 55%); } } .component.full-page-slide .fullpage-frames{ max-width:120rem; } .content__details ol li a{ color: #00267e !important; } </style> <div class="fullpage-frames"> <div class="frame-top"> <div class="grid-x"> <div class="cell medium-9 large-6"> <a href="/research-at-nhgri/Projects/Democratizing-Education"> <img src="/sites/default/files/media/images/2022-08/s_cell_logo_white_2lines_with_project.png" alt="" class="field-icon-simple" /> </a> <span class="accent teal left"></span> <h1 class="field-headline-expanded">Your mental health and gene therapy</h1> <div class="field-content"><p>Mental health includes emotional, psychological and social well-being. </p> <p>Your mental and physical health are deeply connected. Mental health is important for your health and quality of life.</p> </div> </div> </div> </div> <div class="frame-btm"> </div> </div> </div> </div> <style> @import url('/themes/custom/nhgri/css/style-content.css'); </style> <div id="action-bar" class="cta-bold grid g-x--12 w--100p p-right--55 p-left--55 p-left-lg--21 nose"> <div class="breadcrumb x--4 x-lg--12 yy zoom dark h--89 p--13 flex align-items-center bg-hover--white cursor--pointer " style="order: 1; padding-left: 0px;"> <a href="/"><div class="w--34 h--34 flex"> <svg aria-hidden="true" fill="var(--main)" focusable="false" xmlns="http://www.w3.org/2000/svg" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:serif="http://www.serif.com/" viewBox="0 0 516 320" version="1.1" xml:space="preserve" style=" fill-rule: evenodd; clip-rule: evenodd; stroke-linejoin: round; stroke-miterlimit: 2; "> <g transform="matrix(1,0,0,1,-3608.98,-9200.56)"> <g id="World-view" serif:id="World view"></g> <g id="circle"></g> <g id="circle1" serif:id="circle"></g> <g id="circle2" serif:id="circle"></g> <g id="cross"></g> <g id="cross1" serif:id="cross"></g> <g id="cross2" serif:id="cross"></g> <g transform="matrix(1,0,0,1,294.598,-680.1)"> <path class="logo-arrow" d="M3752.53,9898.42C3746.58,9887.48 3735.12,9880.66 3722.66,9880.66C3708.37,9880.66 3691.75,9880.66 3691.75,9880.66L3778.66,10040.4L3691.75,10200.2L3722.66,10200.2C3735.12,10200.2 3746.58,10193.4 3752.53,10182.5C3775.17,10140.8 3829.78,10040.4 3829.78,10040.4C3829.78,10040.4 3775.17,9940.05 3752.53,9898.42Z"></path> </g> <g transform="matrix(1,0,0,1,258.04,-78.4219)"> <path class="logo-nih" d="M3710.41,9278.99L3384.94,9278.99C3375.92,9278.99 3367.27,9282.57 3360.9,9288.94C3354.52,9295.32 3350.94,9303.97 3350.94,9312.99L3350.94,9564.55C3350.94,9573.56 3354.52,9582.21 3360.9,9588.59C3367.27,9594.97 3375.92,9598.55 3384.94,9598.55L3710.41,9598.55L3797.32,9438.77L3710.41,9278.99ZM3407.04,9367.25L3437.84,9367.25L3501.04,9466.65L3501.04,9367.25L3528.24,9367.25L3528.24,9513.25L3499.24,9513.25L3434.24,9410.65L3434.24,9513.25L3407.04,9513.25L3407.04,9367.25ZM3546.04,9367.25L3573.24,9367.25L3573.24,9513.25L3546.04,9513.25L3546.04,9367.25ZM3674.24,9453.05L3618.24,9453.05L3618.24,9513.25L3591.04,9513.25L3591.04,9367.25L3618.24,9367.25L3618.24,9427.05L3674.24,9427.05L3674.24,9367.25L3701.44,9367.25L3701.44,9513.25L3674.24,9513.25L3674.24,9453.05Z"></path> </g> </g> </svg> </div> </a> <div class="flex p-left--13 justify-content-center align-items--center"> <span class="f--uppercase bold primary"> <a href="/research-at-nhgri/Projects" class="main">Research Projects</a> </span> </div> </div> </div> <div class="page-content column-contents"> <section> <div class="grid g-x--12 p-left--55 p-right--55 p-left-lg--0 p-right-lg--0"> <div class="x--4 x-lg--12 p-right--34"></div> <div class="x--8 x-lg--12 bg--primary white p--55 p-lg--21 p-bottom-lg--55 bg-after--fill p-bottom--55 "> <div class="w--85p " style="font-size: 18px; "> <span class="p-bottom--13 f-weight--light p-bottom--34 "> <p>As a person living with sickle cell disease, you and your support systems make choices about your physical health, while thinking about the impact on your mental health and psychological well-being.  </p><p>These are some questions and actions you may want to take as you think about receiving gene therapy.</p> </span> </div> </div> </div> </section> </div> <style> .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a { color: #34d1bf; font-weight:700; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a:hover { color: #ffffff; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 hr { border-bottom-color: #34d1bf; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a.button { background: #34d1bf; color: #000000; } .column-contents section { margin-top: -140px; margin-bottom: 80px; } #action-bar a.main { color: #011850 !important; font-weight: 600; } #action-bar a.main:hover{ color: #464646 !important; } .page-content.column-contents { max-width: 120rem; margin: 0 auto; } @media(max-width:992px){ .bg-after--fill::after{ display:none !important; } .column-contents section { margin-top: 0; margin-bottom: 40px; } .w--85p{ width: 95% !important; } ul.c-content li { padding-left: 12px; margin-left: 12px; } } </style> <div class="component link-columns light white show-for-large" id="c-ee230eab-9a4e-48f6-b9ed-602fc45a453b"> <div class="interior"> <div class="grid-container"> <div class="grid-x align-middle"> <div class="cell large-4 heading-cell"> <div class="heading-wrapper"> <h2>Explore this page</h2> </div> </div> <div class="cell large-8 link-cell"> <div class="grid-x"> <div class="cell medium-12 column-cell"> <div class="wrapper link-wrapper"> <ul> <li><a href="#considering" class="arrow royal-blue"> If you are considering gene therapy</a></li> <li><a href="#participate" class="arrow royal-blue">If you decide to receive gene therapy</a></li> <li><a href="#completed" class="arrow royal-blue">If you have already received gene therapy</a></li> </ul> </div> </div> </div> </div> </div> </div> </div> </div> <div id="considering"></div> <style> @import url('/themes/custom/nhgri/css/style-content.css'); </style> <div class="component column-content light grey" id="c-4d3da849-45d6-433b-bce7-42344e7741c0"> <div class="interior"> <div class="grid-container"> <div class="grid-x grid-padding-x column-content-cell-grid"> <div class="cell large-12 text-center margin-bottom-1"> <h2 >If you are considering gene therapy</h2> </div> <div class="cell medium-6 column-content-cell"> <p> </p><p>There are many unknowns about what to expect from gene therapy. Your thoughts, feelings, beliefs and attitudes can have a strong impact on your physical health. Because of this, it’s important to care for your mental and physical health as you consider a gene therapy clinical trial. </p><h3>Focus on your thoughts and feelings.<strong> </strong></h3><p>Discuss and assess your mental health with a mental health professional (like a psychologist, counselor or social worker), support system and/or trusted friend.</p><p>Write about how you feel about your disease and how it affects your life.</p><p>Reflect on why you might want to join this clinical trial. Discuss it with your healthcare provider(s) and your support system.</p> </div> <div class="cell medium-6 column-content-cell"> <p><img src="https://nhgri.prod.acquia-sites.com/sites/default/files/media/images/2022-08/gene-therapy-manthinking2.jpg" data-entity-type="file" alt="man at laptop thinking" width="1024" height="1024"></p> </div> </div> </div> </div> </div> <style> .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a { color: #34d1bf; font-weight:700; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a:hover { color: #ffffff; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 hr { border-bottom-color: #34d1bf; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a.button { background: #34d1bf; color: #000000; } .column-contents section { margin-top: -140px; margin-bottom: 80px; } #action-bar a.main { color: #011850 !important; font-weight: 600; } #action-bar a.main:hover{ color: #464646 !important; } .page-content.column-contents { max-width: 120rem; margin: 0 auto; } @media(max-width:992px){ .bg-after--fill::after{ display:none !important; } .column-contents section { margin-top: 0; margin-bottom: 40px; } .w--85p{ width: 95% !important; } ul.c-content li { padding-left: 12px; margin-left: 12px; } } </style> <style> @import url('/themes/custom/nhgri/css/style-content.css'); </style> <div class="component column-content light white" id="c-4ce1a74e-f07c-4c9f-985b-080d5de32259"> <div class="interior"> <div class="grid-container"> <div class="grid-x grid-padding-x column-content-cell-grid"> <div class="cell large-12 text-center margin-bottom-1"> <h2 ></h2> </div> <div class="cell medium-6 column-content-cell"> <p><img src="/sites/default/files/inline-images/Gene-Therapy-consultation_2.jpg" data-entity-uuid="f8ca211a-7bab-423a-895d-830b39c3d3c4" data-entity-type="file" alt="gene therapy patient consultation" width="900" height="900"></p> </div> <div class="cell medium-6 column-content-cell"> <h3>Reflect on what kind of support system you will need.</h3><p>Your support system will play an important role throughout the process. Let them know about the possible risks and complications of the procedures in the trial.</p><p>Here are some questions that you might ask them:<br> </p><ul><li><em>How much mental, emotional, social and spiritual support will you provide me on this journey?</em><br> </li><li><em>How much can you support me with my healthcare activities (such as taking medicines and getting to appointments), everyday activities and/or finances? </em><br> </li></ul><p>A support system can be a group of people. One person may not have to provide all the help you may need. If you can put together a team to make up your support system, they can share the tasks.</p> </div> </div> </div> </div> </div> <style> .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a { color: #34d1bf; font-weight:700; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a:hover { color: #ffffff; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 hr { border-bottom-color: #34d1bf; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a.button { background: #34d1bf; color: #000000; } .column-contents section { margin-top: -140px; margin-bottom: 80px; } #action-bar a.main { color: #011850 !important; font-weight: 600; } #action-bar a.main:hover{ color: #464646 !important; } .page-content.column-contents { max-width: 120rem; margin: 0 auto; } @media(max-width:992px){ .bg-after--fill::after{ display:none !important; } .column-contents section { margin-top: 0; margin-bottom: 40px; } .w--85p{ width: 95% !important; } ul.c-content li { padding-left: 12px; margin-left: 12px; } } </style> <style> @import url('/themes/custom/nhgri/css/style-content.css'); </style> <div class="component column-content light grey" id="c-e76dfe25-d967-472e-b18d-1647f7632f93"> <div class="interior"> <div class="grid-container"> <div class="grid-x grid-padding-x column-content-cell-grid"> <div class="cell large-12 text-center margin-bottom-1"> <h2 ></h2> </div> <div class="cell medium-6 column-content-cell"> <h3>Consider these other factors.</h3><p><strong>Risks of gene therapy</strong></p><p>Check out the sickle cell disease gene therapy <a href="/research-at-nhgri/Projects/Democratizing-Education/sickle-cell-disease-gene-therapy-FAQ">FAQ</a></p><p><strong>Cost</strong></p><ul><li>What costs does the clinical trial cover?</li><li>What costs are you responsible for paying?</li><li>What costs will your support system be responsible for paying?</li></ul><p><strong>Hospital stay</strong></p><ul><li>You may be hospitalized in a different city for an extended time.</li></ul><p><strong>Work–life factors</strong></p><ul><li>You will need to take time away from your job and other daily responsibilities.</li></ul><p><strong>Manage expectations</strong></p><ul><li>How will you feel if you are not eligible to receive gene therapy?</li><li>How will you feel if the gene therapy procedure does not work?</li></ul> </div> <div class="cell medium-6 column-content-cell"> <p><img src="/sites/default/files/media/images/2022-08/gene-therapy-couple-thinking.jpg" width="900" height="900"></p> </div> </div> </div> </div> </div> <style> .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a { color: #34d1bf; font-weight:700; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a:hover { color: #ffffff; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 hr { border-bottom-color: #34d1bf; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a.button { background: #34d1bf; color: #000000; } .column-contents section { margin-top: -140px; margin-bottom: 80px; } #action-bar a.main { color: #011850 !important; font-weight: 600; } #action-bar a.main:hover{ color: #464646 !important; } .page-content.column-contents { max-width: 120rem; margin: 0 auto; } @media(max-width:992px){ .bg-after--fill::after{ display:none !important; } .column-contents section { margin-top: 0; margin-bottom: 40px; } .w--85p{ width: 95% !important; } ul.c-content li { padding-left: 12px; margin-left: 12px; } } </style> <div id="participate"></div> <style> @import url('/themes/custom/nhgri/css/style-content.css'); </style> <div class="component column-content light white" id="c-e2fa6934-5444-494c-9663-648353c0f771"> <div class="interior"> <div class="grid-container"> <div class="grid-x grid-padding-x column-content-cell-grid"> <div class="cell large-12 text-center margin-bottom-1"> <h2 >If you decide to receive gene therapy</h2> </div> <div class="cell medium-6 column-content-cell"> <p><img src="/sites/default/files/media/images/2022-08/Gene-Therapy-Family-thinking.jpg" data-entity-uuid="aac9f8b5-1af0-49fa-9bfe-8fbc11cd4ea3" data-entity-type="file" alt="family thinking" width="900" height="900"></p> </div> <div class="cell medium-6 column-content-cell"> <p> </p><h3>Think about your support system and your mental health.</h3><ul><li>What kind of support will you need from others as you go through this process?<br> </li><li>How will you <a href="https://www.nimh.nih.gov/health/publications/so-stressed-out-fact-sheet" target="_blank">take care</a> of your thoughts, feelings, beliefs and attitudes through this process?<br> </li><li>How do you care for your thoughts and feelings now?<br>   </li><li>Are there other ways to help you mentally prepare for the unique challenges of participating in a gene therapy clinical trial?<br> </li><li>If possible, discuss your feelings with a mental health professional.</li></ul> </div> </div> </div> </div> </div> <style> .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a { color: #34d1bf; font-weight:700; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a:hover { color: #ffffff; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 hr { border-bottom-color: #34d1bf; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a.button { background: #34d1bf; color: #000000; } .column-contents section { margin-top: -140px; margin-bottom: 80px; } #action-bar a.main { color: #011850 !important; font-weight: 600; } #action-bar a.main:hover{ color: #464646 !important; } .page-content.column-contents { max-width: 120rem; margin: 0 auto; } @media(max-width:992px){ .bg-after--fill::after{ display:none !important; } .column-contents section { margin-top: 0; margin-bottom: 40px; } .w--85p{ width: 95% !important; } ul.c-content li { padding-left: 12px; margin-left: 12px; } } </style> <style> @import url('/themes/custom/nhgri/css/style-content.css'); </style> <div class="component column-content light grey" id="c-ba8fdc90-edd1-4c52-8102-65da286073ae"> <div class="interior"> <div class="grid-container"> <div class="grid-x grid-padding-x column-content-cell-grid"> <div class="cell large-12 text-center margin-bottom-1"> <h2 ></h2> </div> <div class="cell medium-6 column-content-cell"> <p> </p><h3>Think about how you will manage your emotions in the face of these challenges.</h3><p>How will you feel: </p><ul><li>About complications or risks from the procedure?<br> </li><li>If the treatment does not work?<br> </li><li>About staying in the hospital long-term and possibly in a different city to be near your healthcare providers?<br> </li></ul><h3>Focus on caring for your emotions. </h3><p>You will experience many emotions as you go through this process. Do not be afraid to <a href="https://www.cdc.gov/mentalhealth/tools-resources/index.htm" target="_blank">find help</a>.  </p><p>Choose someone in your life you can talk to about how you are feeling without fear of judgement. </p> </div> <div class="cell medium-6 column-content-cell"> <p><img src="/sites/default/files/media/images/2022-08/Mental-health1.jpg" data-entity-uuid="0fa743db-8da4-4008-a117-834f12f63fe4" data-entity-type="file" alt="Woman looking out a window" width="900" height="900"></p> </div> </div> </div> </div> </div> <style> .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a { color: #34d1bf; font-weight:700; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a:hover { color: #ffffff; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 hr { border-bottom-color: #34d1bf; } .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a.button { background: #34d1bf; color: #000000; } .column-contents section { margin-top: -140px; margin-bottom: 80px; } #action-bar a.main { color: #011850 !important; font-weight: 600; } #action-bar a.main:hover{ color: #464646 !important; } .page-content.column-contents { max-width: 120rem; margin: 0 auto; } @media(max-width:992px){ .bg-after--fill::after{ display:none !important; } .column-contents section { margin-top: 0; margin-bottom: 40px; } .w--85p{ width: 95% !important; } ul.c-content li { padding-left: 12px; margin-left: 12px; } } </style> <div id="completed"></div> <style> @import url('/themes/custom/nhgri/css/style-content.css'); </style> <div class="component column-content light white" id="c-4c3ac5b2-2641-4e97-8726-52b0114cf0d4"> <div class="interior"> <div class="grid-container"> <div class="grid-x grid-padding-x column-content-cell-grid"> <div class="cell large-12 text-center margin-bottom-1"> <h2 >If you have already received gene therapy</h2> </div> <div class="cell medium-6 column-content-cell"> <p><img src="/sites/default/files/media/images/2022-08/Gene-Therapy-consult2.jpg" data-entity-uuid="272c24a7-4379-4175-8f07-7e73f9d79403" data-entity-type="file" alt="Patient consultation" width="900" height="900"></p> </div> <div class="cell medium-6 column-content-cell"> <h3>It is normal to have strong feelings after your procedure. </h3><p>If the gene therapy works, you may have survivor’s guilt. This means that you could feel guilty about no longer living with some of the symptoms of sickle cell disease while others still do. You may also feel guilty about being able to participate in a clinical trial when others cannot.<br> </p><p>You may need to continue seeking medical care throughout your life for the effects of living with sickle cell disease. This may be because of previous impacts of the disease on your body.<br> </p><p>You may still experience some symptoms of sickle cell disease.</p><p>Keep caring for your general health. You should keep seeking general health care after treatment. </p><p>You will need long-term follow-up appointments as part of the clinical trial.<br> </p><h3>You may struggle with your social identity.</h3><p>If the gene therapy worked, you may have feel a loss of identity and community from no longer living with sickle cell disease. </p><p>It is important to continue seeking <a href="https://www.nimh.nih.gov/health/find-help" target="_blank">social and mental health support</a> if you feel this struggle.</p><style>.component.column-content ul li{ color:black; }</style> </div> </div> </div> </div> </div> <style> .x--8.x-lg--12.bg--primary.white.p--55.p-lg--21.p-bottom-lg--55.bg-after--fill.p-bottom--55 a { color: #34d1bf; font-weight:700; } 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section-tile active" id="factsheets"> <section class="p-top--55"> <div class="ads__slider "> <div class="viewall p--0 position--relative flex justify-content--space-between"> <button class="view_all" id="view_all">LIST ALL (7)</button> <div class="ads__slider--nav "> <button class="prv"> <svg focusable="false" preserveAspectRatio="xMidYMid meet" fill="currentColor" width="32" height="32" viewBox="0 0 32 32" aria-hidden="true" xmlns="http://www.w3.org/2000/svg" data-di-res-id="ebcfc89d-50165c6c" data-di-rand="1719376382139"><path d="M10 16L20 6 21.4 7.4 12.8 16 21.4 24.6 20 26z"></path><title>Chevron left</title></svg> </button> <button class="nxt"> <svg focusable="false" preserveAspectRatio="xMidYMid meet" fill="currentColor" width="32" height="32" viewBox="0 0 32 32" aria-hidden="true" xmlns="http://www.w3.org/2000/svg" data-di-res-id="4da3aa7b-b9372c56" data-di-rand="1719376382172"><path d="M22 16L12 26 10.6 24.6 19.2 16 10.6 7.4 12 6z"></path><title>Chevron right</title></svg> </button> </div> </div> <div class="ads__slider--container" > <div class="ads__slider--item bg--primary bg--cover" id="slide-item"> <div class="ads__slider--content effect-h" > <img src="/sites/default/files/media/images/2024-09/gene_therapy_education_materials_dtn_copy_0.webp" alt="a family with a young girl high-fiving her doctor"/> <div class="effect-h__content"> <h3>Sickle cell disease gene therapy education project</h3> <div > <p>The Democratizing Education for Sickle Cell Disease Gene Therapy project developed patient-focused educational materials for the sickle cell community.</p> <a href="/research-at-nhgri/Projects/Democratizing-Education" target="_self" class="p-top--21"><button class="m-top--21">Read more</button></a> </div> </div> </div> </div> <div class="ads__slider--item bg--primary bg--cover" id="slide-item"> <div class="ads__slider--content effect-h" > <img src="/sites/default/files/media/images/2022-08/stem_cells_dyn_new3.jpg" alt=""/> <div class="effect-h__content"> <h3>Understanding the blood cell</h3> <div > <p>Learn about the different types of hemoglobin.</p> <a href="/research-at-nhgri/Projects/Democratizing-Education/understanding-red-blood-cell" target="_self" class="p-top--21"><button class="m-top--21">Read more</button></a> </div> </div> </div> </div> <div class="ads__slider--item bg--primary bg--cover" id="slide-item"> <div class="ads__slider--content effect-h" > <img src="/sites/default/files/media/images/2022-09/gene_therapy_approaches_dyn.jpg" alt="Doctor and patient"/> <div class="effect-h__content"> <h3>Understanding gene therapy approaches</h3> <div > <p>A variety of approaches target the blood stem cells to relieve or reduce your symptoms of sickle cell disease.</p> <a href="/research-at-nhgri/Projects/Democratizing-Education/understanding-gene-therapy-approaches" target="_self" class="p-top--21"><button class="m-top--21">Read more</button></a> </div> </div> </div> </div> <div class="ads__slider--item bg--primary bg--cover" id="slide-item"> <div class="ads__slider--content effect-h" > <img src="/sites/default/files/media/images/2022-08/scd_starterguide_dyn_new3.jpg" alt="Doctor and patient consultation"/> <div class="effect-h__content"> <h3>Navigating sickle cell disease gene therapy</h3> <div > <p>Gene therapy for sickle cell disease is available to you through FDA-approved therapies and through clinical trials.</p> <a href="/research-at-nhgri/Projects/Democratizing-Education/navigating-sickle-cell-disease-gene-therapy" target="_self" class="p-top--21"><button class="m-top--21">Read more</button></a> </div> </div> </div> </div> <div class="ads__slider--item bg--primary bg--cover" id="slide-item"> <div class="ads__slider--content effect-h" > <img src="/sites/default/files/media/images/2022-08/faq_hero2_dyn_new3_0.jpg" alt="A couple in discussion"/> <div class="effect-h__content"> <h3>Sickle cell disease gene therapy FAQ</h3> <div > <p>Discuss these questions with your doctor or health care provider.</p> <a href="/research-at-nhgri/Projects/Democratizing-Education/sickle-cell-disease-gene-therapy-FAQ" target="_self" class="p-top--21"><button class="m-top--21">Read more</button></a> </div> </div> </div> </div> <div class="ads__slider--item bg--primary bg--cover" id="slide-item"> <div class="ads__slider--content effect-h" > <img src="/sites/default/files/media/images/2024-09/patientresources2_dyn.webp" alt="family with a young girl reviewing forms with a healthcare worker"/> <div class="effect-h__content"> <h3>Patient resources for sickle cell disease gene therapy</h3> <div > <p>Sickle cell disease resources for patients</p> <a href="/research-at-nhgri/Projects/Democratizing-Education/more-resources-scd-gene-therapy" target="_self" class="p-top--21"><button class="m-top--21">Read more</button></a> </div> </div> </div> </div> <div class="ads__slider--item bg--primary bg--cover" id="slide-item"> <div class="ads__slider--content effect-h" > <img src="/sites/default/files/media/images/2024-09/healthprofresourcesdyn.webp" alt="a group of four healthcare workers seated at a table having a conversation"/> <div class="effect-h__content"> <h3>Resources for healthcare providers</h3> <div > <p>Sickle cell disease resources for healthcare providers</p> <a href="/research-at-nhgri/Projects/Democratizing-Education/hcproviders-sickle-cell-disease" target="_self" class="p-top--21"><button class="m-top--21">Read more</button></a> </div> </div> </div> </div> </div> </div> </section> </div> <style> .additional-resources#c-1e4ffeba-fa52-42d3-bf8a-5f58d6d016ab #thumbnail-0::after { background-image: url('/sites/default/files/media/images/2019-04/download-PDF-100.jpg'); } .additional-resources#c-1e4ffeba-fa52-42d3-bf8a-5f58d6d016ab #thumbnail-1::after { background-image: url('/sites/default/files/media/images/2019-04/download-website-100.jpg'); } .additional-resources#c-1e4ffeba-fa52-42d3-bf8a-5f58d6d016ab #thumbnail-2::after { background-image: url('/sites/default/files/media/images/2019-04/download-PDF-100.jpg'); } </style> <div class="component additional-resources light grey" id="c-1e4ffeba-fa52-42d3-bf8a-5f58d6d016ab"> <div class="interior"> <div class="grid-container"> <div class="grid-x main-grid"> <div class="cell header-cell large-4"> <h2>Additional resources</h2> </div> <div class="cell content-cell large-8"> <a href="https://www.genome.gov/sites/default/files/media/files/2024-09/Your_mental_health_and_gene_therapy.pdf" target="_self"> <div class="grid-x item"> <div class="cell show-for-medium resource-asset" id="thumbnail-0"> <img src="/sites/default/files/media/images/2019-04/download-PDF-100.jpg" alt="PDF icon"/> </div> <div class="cell auto resource-text"> <span>Download pdf</span> <p id="preview" class="arrow">Your mental health and gene therapy</p> </div> </div> </a> <a href="https://www.nimh.nih.gov/health/find-help" target="_blank"> <div class="grid-x item"> <div class="cell show-for-medium resource-asset" id="thumbnail-1"> <img src="/sites/default/files/media/images/2019-04/download-website-100.jpg" alt="Website icon"/> </div> <div class="cell auto resource-text"> <span>Visit website</span> <p id="preview" class="arrow">Help for mental illnesses (NIMH.gov)</p> </div> </div> </a> <a href="https://custom.cvent.com/38127A0E3DC74E42A758B2B6D50F99E4/files/c42f1d4c0d524f98acca86dc424f6da6.pdf" target="_blank"> <div class="grid-x item"> <div class="cell show-for-medium resource-asset" id="thumbnail-2"> <img src="/sites/default/files/media/images/2019-04/download-PDF-100.jpg" alt="PDF icon"/> </div> <div class="cell auto resource-text"> <span>Download PDF</span> <p id="preview" class="arrow">Cure Sickle Cell Initiative resources</p> </div> </div> </a> </div> </div> </div> </div> </div> <div class="component disclaimer-text light white" id="c-fc3d3bee-31ea-46c6-bf8e-1bba8f5c0b38"> <div class="interior"> <div class="grid-container"> <div class="grid-x"> <div class="cell disclaimer "> <div><p>The Democratizing Education Project welcomes your feedback about the sickle cell disease gene therapy resources. Please email your comments or questions to <a href="mailto:DemocratizingEd@mail.nih.gov">DemocratizingEd@mail.nih.gov</a>.</p><p>These educational materials are for informational purposes only. They are meant to promote your general understanding of gene therapy for sickle cell disease. We encourage you to use these educational materials to talk with your healthcare provider or a clinical trial team.</p></div> </div> </div> </div> </div> </div> <div class="component last-updated light white" id="c-e13c95e2-6871-4f43-bb54-5fecd0aebf0d"> <div class="interior"> <div class="grid-container"> <div class="grid-x text-center"> <div class="cell"> <p>Last updated: <span>September 27, 2024</span></p> </div> </div> </div> </div> </div> </div> </article> </div> </div> </main> <footer id="footer" role="contentinfo"> <section> <div class="subscription hur" style="--x:110px; --y:434.594px;" id="subscription"> <div class="container flex"> <div class="email"> <div class="content"> <h3 class="underscore">Get Updates</h3> <p>Enter your email address to receive updates about the latest advances in genomics research.</p> <form action="https://eepurl.com/dkinPH" method="post" id="mc-embedded-subscribe-form" name="mc-embedded-subscribe-form" class="validate" target="_blank" novalidate> 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