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205                <p class="title">Rare Diseases in SC:</p>
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207                        Connecting, Informing &amp; Educating
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249                <p>The South Carolina Rare Disease Advisory Council (RDAC) is committed to providing resources and support networks relating to diagnosis, treatment access, services, and education for members of the rare disease community. If you have a rare disease resource suggestion, please contact us at [email protected]. </p>
250<h2>General Resources <strong><br />
251</strong></h2>
252<p>These resources offer helpful information to support a wide scope of audiences, including patients, caregivers, advocates, researchers, and health care providers:</p>
253<p><a href="https://globalgenes.org/"><strong>Global Genes</strong></a><strong> </strong>is a non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. </p>
254<p><a href="https://rarediseases.org/"><strong><span style="color: blue;">National Organization for Rare Diseases</span></strong></a><strong> </strong>promotes research, advocacy, awareness, and public policies that benefit rare disease communities nationwide.</p>
255<p><strong><a href="https://dph.sc.gov/professionals/health-professionals/health-services-facilities/newborn-screening" title="dph.sc.gov website. You are being directed to a website outside of MUSC and MUSC is not responsible for any content or other aspects of the external website.">Newborn Screening</a><br />
256</strong>The&nbsp;<a href="https://dph.sc.gov/professionals/health-professionals/health-services-facilities/newborn-screening" title="dph.sc.gov website. You are being directed to a website outside of MUSC and MUSC is not responsible for any content or other aspects of the external website.">Newborn Screening Program</a>, managed by the South Carolina Department of Public Health, allows for the testing of every newborn in SC to check for harmful disorders that aren&rsquo;t otherwise apparent at birth. This SC DPH website offers manuals for and information about the disorders for which the testing screens, as well as information sheets on the various disorders for both medical providers and parents/caregivers.</p>
257<p><a href="https://www.rareadvocacymovement.com/"><strong><span style="color: blue;">Rare Advocacy Movement</span></strong></a><strong> </strong>represents a rare disease patient and carer ecosystem that relies upon specialized global collaborations to address the needs of the patient and carer community from the community perspective. </p>
258<p><a href="https://www.rarediseasesnetwork.org/"><strong><span style="color: blue;">Rare Diseases Clinical Research Network</span></strong></a><strong> </strong>is designed to advance medical research on rare disease by providing support for clinical studies and facilitating collaboration, study enrollment, and data sharing. </p>
259<p><a href="https://www.rarediseaseday.org"><strong><span style="color: blue;">Rare Disease Day</span></strong></a><strong> </strong>is held annually on the last day of February to raise awareness and promote research and advocacy for the rare disease community. </p>
260<p><a href="https://www.rarediseasediversity.org/"><strong><span style="color: blue;">Rare Disease Diversity Coalition</span></strong></a> unifies rare disease experts, health and diversity advocates, and industry leaders to identify and advocate for evidence-based solutions to alleviate the disproportionate burden of rare diseases on historically marginalized populations.</p>
261<p>In addition to these organizations, SCRDAC has identified additional online resources that they have organized for patients, advocates, providers, and researchers, and categorized according to topic areas relevant to those specific groups. </p>
262<p>We also encourage you to visit our <a href="https://rarediseasesc.org/research">Research</a> page if you are seeking clinical research studies to learn about and participate in as a volunteer. </p>
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269                <h2>Advocate/Patient Resources </h2>
270<p>These resources are intended to benefit patients, advocates, and caregivers at any given stage of their rare disease journey: from seeking an official diagnosis and learning about rare disease symptoms and treatments, to managing the costs of healthcare, to promoting advocacy and awareness.&nbsp; </p>
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280                            <p>The following resources provide links to clinical programs with experts in rare disease diagnosis who specialize in undiagnosed patients: <img src="/-/sm/global-images/stock-art/computer-work-stock.jpg?h=227&amp;w=339&amp;hash=01C766643D7A844091945F54668F24A2" style="height: 227px; width: 339px; float: right;" alt="Person typing on a computer." /></p>
281<p><a href="https://undiagnosed.hms.harvard.edu/"><strong><span style="text-decoration: none; color: blue;">Undiagnosed Diseases Network</span></strong></a> is an NIH supported research study that seeks to provide answers for patients and families affected by these mysterious conditions. </p>
282<p><a href="https://undiagnosed.iamrare.org/"><strong><span style="text-decoration: none; color: blue;">NORD Undiagnosed Disease Registry</span></strong></a><strong> </strong>is an online registry for patients with undiagnosed rare diseases, supported by the NORD platform. </p>
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291                    <label for="accordion-component-6f86e334-e1eb-4911-a93a-1f152cb9e5fc" class="accordion-component-button">Finding Information About Your Disease </label>
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293                            <p>In addition to the umbrella organizations listed in General Resources, these online resources can help you navigate information about your rare disease:</p>
294<p><a href="https://autoimmune.org/"><strong>Auto Immune </strong></a>is a global non-profit focused on promoting autoimmune disease awareness, advocacy, education and research. </p>
295<p><a href="https://www.genomeconnect.org/en/"><strong><span style="text-decoration: none; color: blue;">Genome Connect</span></strong></a><strong> </strong>is an online registry that helps patients share their genetic and health information. </p>
296<p><a href="https://rarediseases.org/advancing-research/patient-registry-program/"><strong><span style="text-decoration: none; color: blue;">IAMRARE Registry</span></strong></a><strong> </strong>is an online registry on NORD&rsquo;s platform that helps patients share data and researchers begin studies that will inform medical research and translational science for rare diseases. </p>
297<p><a href="https://rarediseases.info.nih.gov/"><strong><span style="text-decoration: none; color: blue;">NCATS Genetic and Rare Diseases Information Center</span></strong></a><strong> </strong>offers free access for the rare disease community to obtain information, get diagnosis, and find resources. </p>
298<p><a href="https://rarediseases.org/rare-diseases/"><strong><span style="text-decoration: none; color: blue;">NORD Rare Disease Database</span></strong></a><strong> </strong>helps newly diagnosed patients of rare diseases locate information on symptoms, causes, treatments, clinical trials, and patient advocacy organizations. </p>
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307                    <label for="accordion-component-e1ba4d4d-0b87-4125-ab16-dcca97fd0f8e" class="accordion-component-button">Managing Financial Costs</label>
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309                            <p style="text-align: left;"><img src="/-/sm/global-images/stock-art/explaination-of-benefits.jpg?h=227&amp;w=339&amp;hash=0742F9ABE765BBAEEBD5E5D5EAF13C99" style="height: 227px; width: 339px; vertical-align: middle;" alt="Stock art of a close up a document that reads &quot;Explaination of benefits&quot;" /></p>
310<p style="text-align: left;">Managing the cost of rare disease diagnosis and treatment can be expensive and challenging for patients and their families. The following resources are available for those who qualify for financial assistance:</p>
311<p><strong>Federal Resources </strong></p>
312<p><a href="https://www.dol.gov/general/topic/health-plans/cobra"><strong><span style="text-decoration: none; color: blue;">COBRA</span></strong></a><strong> </strong>is government legislation that gives workers and families who lose their benefits through job loss the opportunity to elect continuing group health benefits provided by their employer for a limited time period. </p>
313<p><a href="https://www.medicare.gov/"><strong><span style="text-decoration: none; color: blue;">Medicare</span></strong></a><strong> </strong>is a government insurance program designated for people 65 years of age or older, young people with disabilities, and people with end-stage renal disease. </p>
314<p><a href="https://www.medicaid.gov/"><strong><span style="text-decoration: none; color: blue;">Medicaid</span></strong></a><strong> </strong>is a government insurance program for families and individuals with low income. </p>
315<p><a href="https://www.irs.gov/affordable-care-act#:~:text=The%20Affordable%20Care%20Act%20contains,and%20families%20file%20their%20taxes."><strong><span style="text-decoration: none; color: blue;">Affordable Care Act</span></strong></a><strong> </strong>offers access to the government insurance marketplace for health insurance policies which are provided by private insurance companies for individuals, families, and small businesses.&nbsp; </p>
316<p><a href="https://www.usa.gov/"><strong><span style="text-decoration: none; color: blue;">USA.Gov</span></strong></a><strong> </strong>provides links to federal resources that offer financial assistance for medical costs and prescription drugs. </p>
317<p><strong>State Resources </strong></p>
318<p><a href="https://www.scdhhs.gov/"><strong><span style="text-decoration: none; color: blue;">Healthy Connections</span></strong></a><strong> </strong>is South Carolina&rsquo;s Medicaid program that provides health coverage for eligible SC residents. </p>
319<p><a href="https://dss.sc.gov/assistance-programs/"><strong><span style="text-decoration: none; color: blue;">SC Department of Social Services</span></strong></a><strong> </strong>
319offers assistance programs to families who are eligible to receive financial assistance. </p>
320<p><a href="https://www.shiphelp.org/about-medicare/regional-ship-location/south-carolina"><strong><span style="text-decoration: none; color: blue;">SC Health Insurance Assistance Program</span></strong></a><strong> </strong>provides help and resources for aging SC residents with disabilities.</p>
321<p><strong>Non-Profit Resources</strong></p>
322<p><strong><a href="https://www.needymeds.org">NeedyMeds</a></strong> is a non-profit dedicated to improving access to affordable healthcare for individuals in need.&nbsp; </p>
323<p><a href="https://www.patientadvocate.org/"><strong><span style="text-decoration: none; color: blue;">Patient Advocate Foundation</span></strong></a> provides patient services and promotes health care equity by removing obstacles to quality health care access. </p>
324<p><a href="https://rarediseases.org/patient-assistance-programs/"><strong><span style="text-decoration: none; color: blue;">RARECARE Patient Assistance Programs</span></strong></a> provides information on caregiver aid, financial assistance, and educational support for patients and caregivers of patients with rare diseases.&nbsp; </p>
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335                            <p>Sharing your diagnosis with friends, family, educators, and employees can help them better understand how to accommodate your condition. Additionally, there are advocacy programs and organizations that provide support, promote equity, and spread awareness for patients with rare diseases and their families:</p>
336<img src="/-/sm/global-images/stock-art/nutrition-main-image.jpg?h=227&amp;w=339&amp;hash=E7C836605D9039918C6863BE471C473C" style="height: 227px; width: 339px; float: right; margin-top: 20px;" alt="A woman pointing to an apple on the screen of a presentation she is giving." />
337<p><strong>Education</strong></p>
338<p><a href="https://sites.ed.gov/idea/"><strong><span style="text-decoration: none; color: blue;">Individuals with Disabilities Education Act</span></strong></a><strong> </strong>provides information and resources on children with disabilities. </p>
339
340<p><strong>Advocacy </strong></p>
341<p><a href="https://everylifefoundation.org"><strong><span style="text-decoration: none; color: blue;">EveryLife Foundation</span></strong></a><strong> </strong>advocates for science-driven legislation and policy to advance the treatment and diagnosis of patients with rare diseases. </p>
342<p><a href="https://rarediseasefoundation.org"><strong><span style="text-decoration: none; color: blue;">Rare Disease Foundation</span></strong></a><strong> </strong>focuses on pursuing potential cures and providing funding for research projects, as well as resources for patients and caregivers of patients with rare diseases. </p>
343<p><a href="https://www.rarediseasesnetwork.com/patient-advocacy-groups"><strong><span style="text-decoration: none; color: blue;">RDCRN Patient Advocacy Groups</span></strong></a><strong> </strong>are organizations that promote the needs of patients of rare diseases for the advancement of research and improvement of outcomes. </p>
344<p><a href="https://rarediseases.org/community-support/rarelaunch/"><strong><span style="text-decoration: none; color: blue;">Rare Disease RareLaunch</span></strong></a><strong> </strong>offers courses and resources for leaders to form a rare disease nonprofit organization. </p>
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352                <h2>Provider/Researcher Resources </h2>
353<p>These resources are intended to support clinicians and researchers who are seeking support at various stages of their clinical practices and research studies: from identifying current diagnosis and treatment methodologies for rare disease patients, to collaborating on research and registry programs, to learning how to improve patient treatment and care. </p>
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361Seeking Research Support </label>
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363                            <p><img src="/-/sm/global-images/stock-art/provider-at-desk-using-a-computer.jpg?h=227&amp;w=339&amp;hash=4FE13C301DA3372FE7E3F529D9C5D3F3" style="height: 227px; width: 339px; float: left; margin-right: 20px;" alt="Person in scrubs at a desk using a computer and tablet" />Medical professionals are trained that when they hear hoofbeats, to think of a horse, not a zebra, or in other words, to think of the most common answer. However, SC RDAC and the rare disease community encourage health care providers to consider the possibility that the hoofbeats belong to a zebra, as not all diagnosis are common. The following resources are meant to help provide providers with current information on rare disease diagnosis, treatment, and awareness for their patients:</p>
364<p><strong><span style="text-decoration: none; color: blue;"></span></strong><strong><span style="text-decoration: none; color: blue;">&nbsp;</span></strong></p>
365<p><a href="https://ncats.nih.gov/research/research-resources/gard"><strong><span style="text-decoration: none; color: blue;">NCATS Genetic and Rare Diseases Information Center</span></strong></a> is an NIH supported institute that offers resources and toolkits for research, funding, and training for researchers. </p>
366<p><a href="https://rarediseases.org/clinicians-researchers/"><strong><span style="text-decoration: none; color: blue;">NORD Clinicians and Researchers</span></strong></a> is a network powered by NORD to provide support in research and health care for clinicians and researchers of rare disease. </p>
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377                            <p>Novel diagnostics and therapeutics for rare diseases can only be developed through the conduction of clinical research and participation of research volunteers. These clinical trials are monitored by the NIH and U.S. FDA. Whether you are seeking to stay current in medical conditions and research studies, collaborate on registry programs, or learn how to improve patient treatment and care, then there are several resources available:
378</p>
379<p><strong><a href="https://c-path.org">C-Path</a></strong> is a nonprofit that works with the FDA under the 2005 Critical Path Initiative Program to foster collaboration between industry leaders, regulators, researchers, scientists, and patients to help improve and streamline the drug development process for people with critical medical needs. </p>
380<p><strong><a href="https://profiles.musc.edu/search/">Palmetto Profiles</a></strong> is a research networking tool provided for researchers, mentors and mentees, and research community and industry partners within the Health Sciences South Carolina consortium. <img src="/-/sm/global-images/stock-art/dcd-lung-blog.jpg?h=233&amp;w=349&amp;hash=8EF419BD5FE2984C927387872D4F454F" style="width: 349px; height: 233px; float: right; margin-top: 20px; margin-left: 20px;" alt="Two doctors looking at a computer screen." /></p>
381<p><a href="https://registries.ncats.nih.gov/"><strong><span style="text-decoration: none; color: windowtext;">Rare Diseases Registry Program</span></strong></a><strong> </strong>helps researchers learn how to build and manage their registries in order to connect with patients of the rare disease community. </p>
382<p><a href="https://www.rarediseasesnetwork.org/research-groups"><strong><span style="text-decoration: none; color: windowtext;">RDCRN Research Group</span></strong></a><strong> </strong>is an NIH-funded research network that encourages collaborative research to better understand and improve diagnosis and treatment of rare diseases. </p>
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