{"id":54466,"date":"2024-08-15T13:05:07","date_gmt":"2024-08-15T17:05:07","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?page_id=54466"},"modified":"2025-03-12T10:14:04","modified_gmt":"2025-03-12T14:14:04","slug":"patientadvocacypartnerships","status":"publish","type":"page","link":"https:\/\/www.simonssearchlight.org\/patientadvocacypartnerships\/","title":{"rendered":"Patient Advocacy Partnerships: Empowering Communities in Research"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-53060\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082343\/PAG-support-300x300.png\" alt=\"\" width=\"300\" height=\"300\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082343\/PAG-support-300x300.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082343\/PAG-support-1024x1024.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082343\/PAG-support-150x150.png 150w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082343\/PAG-support-768x768.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082343\/PAG-support.png 1080w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/p>\n<h2>Introduction<\/h2>\n<h4>Welcome to <span class=\"notranslate\">Simons Searchlight<\/span>, an online international research program. We\u2019re dedicated to building a comprehensive natural history database, biorepository, and resource network of over 185 rare genetic neurodevelopmental disorders.<\/h4>\n<p><strong>View the videos below showcasing the invaluable contribution of patient advocacy communities in propelling research forward.<\/strong><\/p>\n<iframe loading=\"lazy\" title=\"YouTube video player\" src=\"https:\/\/www.youtube.com\/embed\/FuvhmiPsXbo?si=O_Lw1QCC0rSkVQ68\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<iframe loading=\"lazy\" title=\"YouTube video player\" src=\"https:\/\/www.youtube.com\/embed\/qf_gnLDdEIk?si=LWgwsO53HxP12fpM\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p>At <span class=\"notranslate\">Simons Searchlight<\/span>, we recognize the crucial role that patient advocacy groups play in advancing rare disease research. In addition to conducting research, we work hand in hand with patient advocacy groups to amplify outreach efforts and facilitate greater participation in <span class=\"notranslate\">Simons Searchlight<\/span>.<\/p>\n<h2>Our Commitment to the Partnership: Outreach &amp; Education<\/h2>\n<p>We develop compelling materials, including captivating videos, insightful interviews, and dynamic campaigns to raise awareness and encourage action within the genetic disorder community. By harnessing the power of engaging content, we aim to broaden knowledge and foster active participation among diverse audiences.<\/p>\n<p>Whether through in-person meetings or virtual gatherings, <span class=\"notranslate\">Simons Searchlight<\/span> actively contributes to advocacy group events. Our team of experts excels in delivering complex scientific content in a manner that is accessible and engaging, ensuring that your community members feel empowered and informed.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-53018 size-large\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082322\/Sharing-info-back-option-2-e1723739045355-1024x521.png\" alt=\"\" width=\"1024\" height=\"521\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082322\/Sharing-info-back-option-2-e1723739045355-1024x521.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082322\/Sharing-info-back-option-2-e1723739045355-300x153.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082322\/Sharing-info-back-option-2-e1723739045355-768x391.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082322\/Sharing-info-back-option-2-e1723739045355.png 1080w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/p>\n<h2>Expertise and Support<\/h2>\n<p><span class=\"notranslate\">Simons Searchlight<\/span> offers a wealth of expertise across various research topics \u2013 rare disease research, neuroscience, genetics, clinical science, behavioral development, and grant funding. Our team is committed to guiding advocacy groups as they navigate their development journey, providing invaluable insights and support along the way. Read more about the <a href=\"https:\/\/www.simonssearchlight.org\/about\/simons-searchlight-staff\/\" target=\"_blank\" rel=\"noopener\"><span class=\"notranslate\">Simons Searchlight<\/span> team<\/a>.<\/p>\n<h2>Addressing the Responsibility of Data Stewardship<\/h2>\n<p><strong>As stewards of data, we understand the weight that comes with managing sensitive information.<\/strong><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-16098 alignleft\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092228\/DESIGN_ELEMENTS_lt-blue-shape-blue-hole-300x300.png\" alt=\"\" width=\"69\" height=\"69\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092228\/DESIGN_ELEMENTS_lt-blue-shape-blue-hole-300x300.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092228\/DESIGN_ELEMENTS_lt-blue-shape-blue-hole-1024x1024.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092228\/DESIGN_ELEMENTS_lt-blue-shape-blue-hole-150x150.png 150w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092228\/DESIGN_ELEMENTS_lt-blue-shape-blue-hole-768x768.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092228\/DESIGN_ELEMENTS_lt-blue-shape-blue-hole-1536x1536.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092228\/DESIGN_ELEMENTS_lt-blue-shape-blue-hole-2048x2048.png 2048w\" sizes=\"(max-width: 69px) 100vw, 69px\" \/>At <span class=\"notranslate\">Simons Searchlight<\/span>, we take this responsibility seriously by implementing robust protocols and safeguards to ensure the security and integrity of our data at all times. We have a dedicated team and established processes in place to manage this, relieving you of the responsibility.<\/p>\n<p>In addition to our commitment to ethical behavior, we are fully compliant with the General Data Protection Regulation (GDPR). We prioritize the privacy and protection of personal data, adhering to stringent GDPR guidelines to ensure that all data is handled lawfully, fairly, and transparently. Our comprehensive data protection measures are designed to maintain the confidentiality, integrity, and availability of personal data, providing our users with the confidence that their information is secure.<\/p>\n<h3><em>Participation Progress Dashboard:<\/em><\/h3>\n<p><span style=\"font-weight: 400;\">The new <\/span><strong><span class=\"notranslate\">Simons Searchlight<\/span> Participation Progress Dashboard <\/strong>is <span style=\"font-weight: 400;\">a powerful, interactive tool designed to empower our patient advocacy groups with the most up-to-date data on your genetic community. This dynamic dashboard highlights our collaborative efforts and provides clear insights into participation metrics, including geographical and registration data.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">With this dashboard, you can easily filter and customize your view, making it simple to track the progress of your community. The visual graphs offer a clear understanding of participation trends, equipping you with valuable information to share with your community, researchers, educators, and medical professionals.<\/span><\/p>\n<p><strong>Explore the dashboard today and use this resource to help grow your genetic community: <a href=\"https:\/\/bit.ly\/Searchlight_Participation_Progress_Dashboard\" target=\"_blank\" rel=\"noopener\">bit.ly\/Searchlight_Participation_Progress_Dashboard<\/a><\/strong><\/p>\n<h2>Research Funding &amp; Resources<\/h2>\n<p>High-quality science is essential to advance rare disease research. Our funder, the <span class=\"notranslate\">Simons Foundation<\/span> Autism Research Initiative (SFARI), also provides competitive funding for external research projects. This ensures that scientists across the career spectrum, from basic to clinical and translational science, can apply to access resources to ask innovative questions relevant to the conditions that we study. SFARI&#8217;s long-term commitment brings stability to your ongoing scientific efforts.<\/p>\n<p><strong>And our commitment extends beyond funding, as we offer tangible support through a suite of in-kind services:<\/strong><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><a href=\"https:\/\/base.sfari.org\/\"><span style=\"font-weight: 400;\">SFARI Base<\/span><\/a><span style=\"font-weight: 400;\"> (Researchers worldwide can access de-identified data. Almost 100 scientific articles have used <span class=\"notranslate\">Simons Searchlight<\/span> data)<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><a href=\"https:\/\/www.sfari.org\/resource\/research-match\/\"><span style=\"font-weight: 400;\">Research Match<\/span><\/a><span style=\"font-weight: 400;\"> (recruitment support for external research studies)<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><a href=\"https:\/\/www.simonssearchlight.org\/data-biospecimens\/\"><span style=\"font-weight: 400;\">Blood collection and biosamples management<\/span><\/a><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><a href=\"https:\/\/www.sfari.org\/resource\/ips-cells\/\"><span style=\"font-weight: 400;\">iPSC generation<\/span><\/a><span style=\"font-weight: 400;\">*\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><a href=\"https:\/\/www.simonssearchlight.org\/research\/what-we-study\/\"><span style=\"font-weight: 400;\">Dedicated gene webpages and gene guides<\/span><\/a><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><a href=\"https:\/\/bit.ly\/Genes_We_Study\"><span style=\"font-weight: 400;\">Gene-specific publication summaries<\/span><\/a><\/li>\n<\/ul>\n<p><strong>This practical support allows you to focus on your mission without the logistical hurdles. Learn more about some of these <a href=\"https:\/\/www.simonssearchlight.org\/research\/for-scientists\/\" target=\"_blank\" rel=\"noopener\">research programs<\/a>.<\/strong><\/p>\n<p><em>*SFARI does not automatically create iPSCs for all blood donations collected through <span class=\"notranslate\">Simons Searchlight<\/span>. SFARI collaborates with scientists to prioritize samples for iPSC creation, ensuring they are impactful for research. Participant permission for individual iPSC creation is governed by the <span class=\"notranslate\">Simons Searchlight<\/span> consent form.<\/em><\/p>\n<h2><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-15138 alignright\" style=\"font-size: 16px;\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091928\/PEOPLE_circle-cluster-ppl-1-300x300.png\" alt=\"\" width=\"158\" height=\"158\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091928\/PEOPLE_circle-cluster-ppl-1-300x300.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091928\/PEOPLE_circle-cluster-ppl-1-1024x1024.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091928\/PEOPLE_circle-cluster-ppl-1-150x150.png 150w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091928\/PEOPLE_circle-cluster-ppl-1-768x768.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091928\/PEOPLE_circle-cluster-ppl-1-1536x1536.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091928\/PEOPLE_circle-cluster-ppl-1-2048x2048.png 2048w\" sizes=\"(max-width: 158px) 100vw, 158px\" \/><\/h2>\n<h3>Investing in Patient Advocacy Funding for Research Presented at In-person Conferences<\/h3>\n<p><span class=\"notranslate\">Simons Searchlight<\/span> offers gift funding through SFARI to patient advocacy organizations hosting in-person conferences with a substantial research component. Priority for funding will be given to advocacy groups that collaborate closely with <span class=\"notranslate\">Simons Searchlight<\/span> to enhance recruitment and engagement.<\/p>\n<ul>\n<li><strong>Past SFARI funding opportunities &#8211; <\/strong>&#8220;Conference Support for Rare Neurodevelopmental Disorder Communities in <span class=\"notranslate\">Simons Searchlight<\/span>&#8221;\n<ul>\n<li>This funding opportunity is to support Patient Advocacy Group (PAG) Family Conferences, focusing on groups within the <span class=\"notranslate\">Simons Searchlight<\/span> community. This grant aims to enhance the research component of conferences by supporting everything from scientific presentations to in-person research opportunities for families. Whether your group is new to organizing conferences or has years of experience, this funding can help bring valuable scientific discussions to your community. <strong><a href=\"https:\/\/bit.ly\/SFARI_Funding_Searchlight_PAG_Conferences\" target=\"_blank\" rel=\"noopener\">Learn more<\/a><\/strong>.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<h2>The Role of Patient Advocacy Groups<\/h2>\n<p>Patient advocacy groups are invaluable partners in our mission. As on-the-ground ambassadors, you connect communities and position us as a trusted research partner. Your ongoing support amplifies our impact, enhances our ability to drive meaningful progress in rare disease research, and ensures that the needs of your community are at the heart of everything we do.<\/p>\n<p><strong>Together, we build strong collaborations that bridge the gap between families and researchers, accelerating discoveries and improving outcomes for those affected by rare diseases<\/strong>.<\/p>\n<h2>Why Choose <span class=\"notranslate\">Simons Searchlight<\/span> as Your Research Partner?<\/h2>\n<p><img loading=\"lazy\" decoding=\"async\" class=\" wp-image-53053 alignleft\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082340\/Genetic-counselors-e1723740179615-300x182.png\" alt=\"\" width=\"282\" height=\"171\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082340\/Genetic-counselors-e1723740179615-300x182.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082340\/Genetic-counselors-e1723740179615-1024x622.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082340\/Genetic-counselors-e1723740179615-768x466.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17082340\/Genetic-counselors-e1723740179615.png 1080w\" sizes=\"(max-width: 282px) 100vw, 282px\" \/>Choosing <span class=\"notranslate\">Simons Searchlight<\/span> as your trusted partner means gaining an ally committed to advancing our understanding of rare genetic neurodevelopmental disorders. With long-term commitment and funding from SFARI, we bring a dedicated team of experts, a long-standing registry platform, and research resources to the partnership, steering progress, fostering collaboration, and ultimately improving the lives of those affected by rare genetic neurodevelopmental disorders.<\/p>\n<h2>Contact Information<\/h2>\n<p>Interested in partnering with <span class=\"notranslate\">Simons Searchlight<\/span>? Your journey starts with reaching out to our team at <a href=\"mailto:Coordinator@SimonsSearchlight.org\">Coordinator@SimonsSearchlight.org<\/a>. We eagerly anticipate the opportunity to collaborate with you.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Introduction Welcome to Simons Searchlight, an online international research program. We\u2019re dedicated to building a comprehensive natural history database, biorepository, and resource network of over 185 rare genetic neurodevelopmental disorders. View the videos below showcasing the invaluable contribution of patient advocacy communities in propelling research forward. At Simons Searchlight, we recognize the crucial role that [&hellip;]<\/p>\n","protected":false},"author":18,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/54466"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/users\/18"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=54466"}],"version-history":[{"count":34,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/54466\/revisions"}],"predecessor-version":[{"id":60206,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/54466\/revisions\/60206"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=54466"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}