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<!DOCTYPE html>
<html lang="en">
<head>
<meta charset="UTF-8">
<meta name="viewport" content="width=device-width, initial-scale=1.0">
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<title>Rare Disease Resources in Nebraska | Specialists, Support & Programs</title>
<link rel="canonical" href="https://nebraska-rare.org/resources.html" />
<meta name="description" content="Find rare disease specialists at UNMC and Boys Town, access clinical trials, support programs, financial assistance, and patient advocacy resources across Nebraska.">
<meta name="keywords" content="rare disease specialist Nebraska, UNMC rare disease clinic, Boys Town genetics, rare disease support groups Omaha, Nebraska rare disease programs, clinical trials Nebraska, rare disease healthcare Nebraska">
<meta name="author" content="Nebraska RARE">
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<meta property="og:type" content="website">
<meta property="og:url" content="https://nebraska-rare.org/resources.html">
<meta property="og:title" content="Rare Disease Resources in Nebraska">
<meta property="og:description" content="Find specialists, support programs, and clinical trials for rare diseases in Nebraska">
<meta property="og:site_name" content="Nebraska RARE">
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<meta name="twitter:card" content="summary">
<meta name="twitter:url" content="https://nebraska-rare.org/resources.html">
<meta name="twitter:title" content="Rare Disease Resources in Nebraska">
<meta name="twitter:description" content="Healthcare resources and support for Nebraska families affected by rare diseases">
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<nav>
<div class="container">
<div class="logo-section">
<img src="logo.png" alt="Nebraska RARE Logo">
</div>
<button class="mobile-menu-toggle" onclick="toggleMobileMenu()">☰</button>
<ul id="nav-menu">
<li><a href="index.html">Home</a></li>
<li><a href="who-we-are.html">Who We Are</a></li>
<li><a href="events.html">Events</a></li>
<li><a href="resources.html" class="active">Resources</a></li>
<li><a href="contact.html">Contact</a></li>
</ul>
</div>
</nav>
<div class="page-header">
<h1>Resources</h1>
<p>Support, information, and connections for Nebraska families</p>
</div>
<section>
<div class="container">
<!-- Nebraska Healthcare Resources -->
<div class="resource-category">
<h2>🏥 Nebraska Healthcare Resources</h2>
<div class="resource-grid">
<div class="resource-card">
<span class="resource-icon">🧬</span>
<h3>Boys Town Neurogenetics</h3>
<p>Comprehensive neurogenetics and rare disease clinic providing specialized care for children with genetic conditions.</p>
<a href="https://www.boystownhospital.org" target="_blank" rel="noopener">Visit Website →</a>
</div>
<div class="resource-card">
<span class="resource-icon">🏥</span>
<h3>UNMC Genetics</h3>
<p>University of Nebraska Medical Center offers genetic testing, counseling, and specialized care for rare diseases.</p>
<a href="https://www.unmc.edu" target="_blank" rel="noopener">Visit Website →</a>
</div>
<div class="resource-card">
<span class="resource-icon">👶</span>
<h3>Children's Hospital & Medical Center</h3>
<p>Leading pediatric hospital in Nebraska with specialty care for complex medical conditions.</p>
<a href="https://www.childrensomaha.org" target="_blank" rel="noopener">Visit Website →</a>
</div>
</div>
</div>
<!-- Partner Organizations -->
<div class="resource-category">
<h2>🤝 Partner Organizations</h2>
<div class="resource-grid">
<div class="resource-card">
<span class="resource-icon">♿</span>
<h3>The Arc Nebraska</h3>
<p>Advocacy organization supporting people with intellectual and developmental disabilities and their families.</p>
<a href="https://www.arc-nebraska.org" target="_blank" rel="noopener">Visit Website →</a>
</div>
<div class="resource-card">
<span class="resource-icon">🧩</span>
<h3>Munroe-Meyer Institute (MMI)</h3>
<p>Research and clinical services for developmental disabilities, including autism and genetic conditions.</p>
<a href="https://www.unmc.edu/mmi" target="_blank" rel="noopener">Visit Website →</a>
</div>
<div class="resource-card">
<span class="resource-icon">👨👩👧👦</span>
<h3>PTI Nebraska</h3>
<p>Parent Training and Information center providing support and resources for families of children with disabilities.</p>
<a href="https://www.pti-nebraska.org" target="_blank" rel="noopener">Visit Website →</a>
</div>
<div class="resource-card">
<span class="resource-icon">🏛️</span>
<h3>DD Council Nebraska</h3>
<p>Developmental Disabilities Council advocating for policy and systems change in Nebraska.</p>
<a href="https://dhhs.ne.gov/DD%20Council" target="_blank" rel="noopener">Visit Website →</a>
</div>
</div>
</div>
<!-- National Resources -->
<div class="resource-category">
<h2>🌎 National Rare Disease Resources</h2>
<div class="resource-grid">
<div class="resource-card">
<span class="resource-icon">🔬</span>
<h3>NORD (National Organization for Rare Disorders)</h3>
<p>Leading advocacy organization providing resources, support, and information for the rare disease community.</p>
<a href="https://rarediseases.org" target="_blank" rel="noopener">Visit Website →</a>
</div>
<div class="resource-card">
<span class="resource-icon">📚</span>
<h3>Genetic and Rare Diseases (GARD)</h3>
<p>NIH information center providing reliable information about genetic and rare diseases.</p>
<a href="https://rarediseases.info.nih.gov" target="_blank" rel="noopener">Visit Website →</a>
</div>
<div class="resource-card">
<span class="resource-icon">💊</span>
<h3>EveryLife Foundation</h3>
<p>National advocacy organization working to improve healthcare policy for rare disease patients.</p>
<a href="https://everylifefoundation.org" target="_blank" rel="noopener">Visit Website →</a>
</div>
<div class="resource-card">
<span class="resource-icon">💙</span>
<h3>Hunter's Hope Foundation</h3>
<p>Reducing stressors for families affected by Duchenne Muscular Dystrophy and DEGS1 Leukodystrophy by eliminating barriers to accessible resources, funding research, and improving community understanding.</p>
<a href="https://www.huntershopeheroes.org" target="_blank" rel="noopener">Visit Website →</a>
</div>
<div class="resource-card">
<span class="resource-icon">💪</span>
<h3>Parent Project Muscular Dystrophy</h3>
<p>Leading organization fighting Duchenne and Becker muscular dystrophy through research, advocacy, and support for affected families.</p>
<a href="https://www.parentprojectmd.org" target="_blank" rel="noopener">Visit Website →</a>
</div>
</div>
</div>
<!-- Financial & Support Resources -->
<div class="resource-category">
<h2>💰 Financial & Travel Support</h2>
<div class="resource-grid">
<div class="resource-card">
<span class="resource-icon">✈️</span>
<h3>CHAD (Children's Hospital Aid and Diagnosis)</h3>
<p>Provides travel assistance for families traveling to medical appointments in Nebraska.</p>
<a href="#" onclick="alert('Contact info@nebraska-rare.org for CHAD information'); return false;">Contact Us for Info</a>
</div>
<div class="resource-card">
<span class="resource-icon">💳</span>
<h3>PAN Foundation</h3>
<p>Patient assistance for copays and out-of-pocket medication costs for chronic and rare diseases.</p>
<a href="https://www.panfoundation.org" target="_blank" rel="noopener">Visit Website →</a>
</div>
<div class="resource-card">
<span class="resource-icon">🏠</span>
<h3>Ronald McDonald House</h3>
<p>Housing for families with children receiving medical treatment away from home.</p>
<a href="https://www.rmhc.org" target="_blank" rel="noopener">Visit Website →</a>
</div>
</div>
</div>
<!-- Contact CTA -->
<div style="background: linear-gradient(135deg, var(--primary-navy), #003d6b); color: white; padding: 3rem; border-radius: 12px; text-align: center; margin-top: 3rem;">
<h2 style="color: white; margin-bottom: 1rem;">Need Help Finding Resources?</h2>
<p style="font-size: 1.1rem; margin-bottom: 2rem; opacity: 0.95;">We're here to help connect you with the support and information you need.</p>
<a href="contact.html" style="display: inline-block; background: var(--primary-red); color: white; padding: 1rem 2rem; border-radius: 6px; text-decoration: none; font-weight: 600; transition: all 0.3s ease;">Contact Us</a>
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</div>
</section>
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<div class="footer-content">
<div>
<div class="logo-footer">
<img src="logo.png" alt="Nebraska RARE Logo">
</div>
<p>Empowering families impacted by rare diseases through education, advocacy, and community inclusion.</p>
</div>
<div>
<h4>Quick Links</h4>
<ul>
<li><a href="index.html">Home</a></li>
<li><a href="who-we-are.html">Who We Are</a></li>
<li><a href="events.html">Events</a></li>
<li><a href="resources.html">Resources</a></li>
<li><a href="contact.html">Contact</a></li>
</ul>
</div>
<div>
<h4>Contact Us</h4>
<div class="contact-info">
<p><strong>Email:</strong><br>
<a href="mailto:info@nebraska-rare.org">info@nebraska-rare.org</a></p>
<p><strong>Phone:</strong><br>
<a href="tel:+14029572061">(402) 957-2061</a></p>
</div>
</div>
</div>
<div class="footer-bottom">
<p>© 2026 Nebraska RARE. Working toward 501(c)(3) nonprofit status.</p>
</div>
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