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This is your starting point to learn about the genetic disorders that Simons Searchlight<\/span> studies. We regularly update these pages with new research and information for families.<\/p>\nHere\u2019s an overview of the type of information you\u2019ll find here:<\/p>\n
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- Frequently Asked Questions:<\/a>\u00a0Learn more about Simons Searchlight<\/span>, research participation, and account registration.<\/li>\n
- What We Study:<\/a> Information about the genetic variants that we study.<\/li>\n
- Genetics FAQ:<\/a> Background information you need to understand your genetic lab reports. We review chromosomes, genes, copy number variants (CNVs), genetic variants in a person\u2019s DNA code, and more.<\/li>\n
- COVID Research<\/a>: Simons Searchlight<\/span> conducted research on COVID-19 and its impact on our community.<\/li>\n
- What Is Autism?<\/a> Information about the features of autism spectrum disorder.<\/li>\n
- Researcher Profiles:<\/a> Interviews with researchers who have used Simons Searchlight<\/span> data.<\/li>\n
- Guardianship Resources:<\/a> Information about guardianship and continuing research participation into adulthood.<\/li>\n
- A Family Guide: Navigating Life After a Rare Genetic Diagnosis<\/a>: This comprehensive guide walks families through the steps from receiving a diagnosis to finding resources<\/span> and potential support systems.<\/li>\n
- Navigating the World of Rare Disorders<\/a>: Resources<\/span> to help you begin to adjust to your child\u2019s diagnosis.<\/li>\n
- Organizing Medical Records<\/a>: Information on ways to create and maintain a personal medical file.<\/li>\n
- Data Sharing<\/a>: Resources<\/span> on how to share your information with a data registry and what to expect.<\/li>\n
- Librarey<\/a>: Created to help families find what they need more easily, Librarey was built from Sierra Phillips\u2019 Disability Resource Guide. It is a search-based platform that brings rare families and researchers together towards the common goal of new treatments.<\/li>\n
- Courageous Parents Network<\/a>: Courageous Parents Network is a non-profit organization that equips and empowers parents and caregivers of children with serious medical conditions through a range of resources<\/span> and tools. These include videos, podcasts, printable guides, Guided Pathways, and blogs, offering insights and perspectives from both families and pediatric clinicians.<\/li>\n
- Multi Sensory Educational Materials: We\u2019ve linked to a variety of multisensory educational resources<\/span> designed to support diverse learning styles. These tools can help integrate multiple senses\u2014such as touch, sight, and sound\u2014into educational activities. For personalized guidance and tailored strategies, occupational therapists are the best resource to provide expert support in this area.\n
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- Do2Learn<\/a><\/li>\n
- Institute of Education Sciences<\/a><\/li>\n
- Strategies to Address Emotional & Behavioral Challenges<\/a><\/li>\n<\/ul>\n<\/li>\n
- 15 Year Anniversary Postcard<\/a>: We’re thrilled to celebrate 15 years of progress together! Download, save, or print this postcard to mark the occasion and celebrate with us.<\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"
This is your starting point to learn about the genetic disorders that Simons Searchlight studies. We regularly update these pages with new research and information for families. Here\u2019s an overview of the type of information you\u2019ll find here: Frequently Asked Questions:\u00a0Learn more about Simons Searchlight, research participation, and account registration. What We Study: Information […]<\/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\/170"}],"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=170"}],"version-history":[{"count":22,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/170\/revisions"}],"predecessor-version":[{"id":61047,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/170\/revisions\/61047"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=170"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
- Institute of Education Sciences<\/a><\/li>\n
- What We Study:<\/a> Information about the genetic variants that we study.<\/li>\n