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Archiving Rare Disease Organizations on the Web – Circulating Now from the NLM Historical Collections
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src="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/Rare-Disease-Day-2024_faces_feature.jpg?resize=600%2C280&ssl=1" class="attachment-post-thumbnail size-post-thumbnail wp-post-image" alt="Rare Disease Day 2024 Poster Graphic" decoding="async" data-attachment-id="28589" data-permalink="https://circulatingnow.nlm.nih.gov/2024/02/29/archiving-rare-disease-organizations-on-the-web/rare-disease-day-2024_faces_feature/" data-orig-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/Rare-Disease-Day-2024_faces_feature.jpg?fit=900%2C401&ssl=1" data-orig-size="900,401" data-comments-opened="1" data-image-meta="{"aperture":"0","credit":"","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"1"}" data-image-title="Rare-Disease-Day-2024_faces_feature" data-image-description="" data-image-caption="" data-medium-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/Rare-Disease-Day-2024_faces_feature.jpg?fit=300%2C134&ssl=1" data-large-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/Rare-Disease-Day-2024_faces_feature.jpg?fit=840%2C374&ssl=1" /> <header class="entry-header"> <h1 class="entry-title">Archiving Rare Disease Organizations on the Web</h1> <div class="entry-meta"><span class="meta-date"><svg class="icon icon-standard" aria-hidden="true" role="img"> <use xlink:href="https://circulatingnow.nlm.nih.gov/wp-content/themes/tortuga/assets/icons/genericons-neue.svg#standard"></use> </svg><a href="https://circulatingnow.nlm.nih.gov/2024/02/29/archiving-rare-disease-organizations-on-the-web/" title="11:00 AM" rel="bookmark"><time class="entry-date published updated" datetime="2024-02-29T11:00:50-05:00">February 29, 2024</time></a></span><span class="meta-author"> <svg class="icon icon-user" aria-hidden="true" role="img"> <use xlink:href="https://circulatingnow.nlm.nih.gov/wp-content/themes/tortuga/assets/icons/genericons-neue.svg#user"></use> </svg><span class="author vcard"><a class="url fn n" href="https://circulatingnow.nlm.nih.gov/author/bethmullen/" title="View all posts by Circulating Now" rel="author">Circulating Now</a></span></span><span class="meta-category"> <svg class="icon icon-category" aria-hidden="true" role="img"> <use xlink:href="https://circulatingnow.nlm.nih.gov/wp-content/themes/tortuga/assets/icons/genericons-neue.svg#category"></use> </svg><a href="https://circulatingnow.nlm.nih.gov/category/about-us/" rel="category tag">About Us</a>, <a href="https://circulatingnow.nlm.nih.gov/category/collections/archives-manuscripts/" rel="category tag">Archives & Manuscripts</a>, <a href="https://circulatingnow.nlm.nih.gov/category/collections/" rel="category tag">Collections</a>, <a href="https://circulatingnow.nlm.nih.gov/category/news/" rel="category tag">News</a></span><span class="meta-comments"> <svg class="icon icon-edit" aria-hidden="true" role="img"> <use xlink:href="https://circulatingnow.nlm.nih.gov/wp-content/themes/tortuga/assets/icons/genericons-neue.svg#edit"></use> </svg><a href="https://circulatingnow.nlm.nih.gov/2024/02/29/archiving-rare-disease-organizations-on-the-web/#comments">2 comments</a></span></div> </header><!-- .entry-header --> <div class="entry-content clearfix"> <p>A <a href="https://medlineplus.gov/rarediseases.html">rare disease</a> is one that affects fewer than 200,000 people in the United States. There are an estimated 7,000 identified rare diseases—a number that continues to grow as research reveals deeper insights into rare conditions—which affect an estimated 25-30 million (or 1 in 10) Americans. Rare diseases are broad in scope and may involve chronic illness, disability, emotional and social challenges, and/or premature death. They often have no treatment or minimally effective treatment, are frequently diagnosed incorrectly, and present as complex medical challenges. Almost half of individuals with a rare disease in the United States are children, with approximately 70% of rare diseases appearing to be genetic in origin.</p> <p>In 2023, the <a href="https://www.nlm.nih.gov/webcollecting/index.html">NLM Web Collecting and Archiving Working Group</a> began developing a <a href="https://archive-it.org/collections/21912">web archive collection</a> that documents the landscape of rare disease research, advocacy work, drug and treatment development, patient experiences, and support networks in the United States as communicated on the web. The Rare Diseases web archive approaches rare diseases as a public health issue of importance, rather than focusing on individual diseases. It documents both government and non-government responses and resources. This work is supported by the <a href="https://www.ncbi.nlm.nih.gov/books/NBK518693/">Collection Development Guidelines</a> of the National Library of Medicine (NLM), which considers websites, blogs, social media and other web content to play an increasingly important role in documenting the scholarly biomedical record and illustrating a diversity of cultural perspectives in health and medicine.</p> <p>The National Library of Medicine has a long history of collecting on rare diseases. NLM Collection Development Guidelines cite <a href="https://www.ncbi.nlm.nih.gov/books/NBK518725/">Medical Genetics</a>—particularly for its impact on our understanding of rare and undiagnosed diseases—as a broad category that is collected comprehensively by the library. NLM supports rare disease research through <a href="https://medlineplus.gov/">MedlinePlus</a>, <a href="https://www.nlm.nih.gov/research/umls/index.html">Unified Medical Language System</a>, and <a href="https://www.ncbi.nlm.nih.gov/medgen/">NCBI MedGen</a>, all of which funnel into the <a href="https://rarediseases.info.nih.gov/">Genetic and Rare Diseases (GARD) Information Center</a> which provides up-to-date information about genetic and rare conditions. NLM has also extended its commitment to providing accurate and trusted information to the public through its <a href="https://www.nnlm.gov/"><span class="ui-provider hl aza hj azb azc azd aze azf azg azh azi azj azk azl azm azn azo azp azq azr azs azt azu azv azw azx azy azz baa bab bac bae baf bag bah" dir="ltr">Network of the National Library of Medicine</span> (NNLM)</a>: In 2018, medical librarians within the NNLM led a <a href="https://infocus.nlm.nih.gov/2018/04/10/getting-it-right-on-rare-diseases-the-national-network-of-libraries-of-medicines-first-citenlm2018-edit-a-thon-on-april-17/">nation-wide Wikipedia edit-a-thon</a> for rare diseases, in which thousands of references and links on Wikipedia sites for rare diseases were updated, thereby supporting millions of Americans in their diagnosis odyssey. NLM’s <a href="https://medlineplus.gov/">MedlinePlus</a> continues to be an important database for information on rare diseases and is continuously updated as research on individual diseases is published.</p> <p>There is significant effort at the federal level to better study, understand, treat, and support rare disease diagnoses. The National Institutes of Health (NIH) is deeply engaged in efforts to identify, research, and treat rare diseases with the goal of improving outcomes and quality of life for rare disease patients and families. The <a href="https://rarediseases.info.nih.gov/">Genetic and Rare Diseases Information Center (GARD)</a> is an NIH program that provides free access to reliable, easy-to-understand information in English and Spanish about genetic and rare diseases. The resource, which is managed by the <a href="https://ncats.nih.gov/">National Center for Advancing Translational Sciences (NCATS)</a>, gathers information from multiple research databases to create a simplified summary of known causes, diagnostic resources, and information on communities of support for individual diseases.</p> <figure id="attachment_28590" aria-describedby="caption-attachment-28590" style="width: 840px" class="wp-caption aligncenter"><a href="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/GARD.jpg?ssl=1"><img data-recalc-dims="1" decoding="async" data-attachment-id="28590" data-permalink="https://circulatingnow.nlm.nih.gov/2024/02/29/archiving-rare-disease-organizations-on-the-web/gard/" data-orig-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/GARD.jpg?fit=1600%2C737&ssl=1" data-orig-size="1600,737" data-comments-opened="1" data-image-meta="{"aperture":"0","credit":"","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"1"}" data-image-title="Genetic and Rare Diseases Information Center (GARD)" data-image-description="" data-image-caption="<p>National Center for Advancing Translational Sciences Genetic and Rare Diseases information Center (GARD) webpage captured September 19, 2023 | View Archived Pages </p> " data-medium-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/GARD.jpg?fit=300%2C138&ssl=1" data-large-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/GARD.jpg?fit=840%2C387&ssl=1" class="size-large wp-image-28590" src="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/GARD.jpg?resize=840%2C387&ssl=1" alt="Screenshot from the GARD website providing information about a disease" width="840" height="387" srcset="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/GARD.jpg?resize=1024%2C472&ssl=1 1024w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/GARD.jpg?resize=300%2C138&ssl=1 300w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/GARD.jpg?resize=768%2C354&ssl=1 768w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/GARD.jpg?resize=1536%2C708&ssl=1 1536w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/GARD.jpg?resize=1200%2C553&ssl=1 1200w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/GARD.jpg?resize=840%2C387&ssl=1 840w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/GARD.jpg?w=1600&ssl=1 1600w" sizes="(max-width: 840px) 100vw, 840px" /></a><figcaption id="caption-attachment-28590" class="wp-caption-text">National Center for Advancing Translational Sciences Genetic and Rare Diseases information Center (GARD) webpage captured September 19, 2023 | <a href="https://wayback.archive-it.org/21912/20230919123112/https:/rarediseases.info.nih.gov/">View Archived Pages</a></figcaption></figure> <p>The <a href="https://ncats.nih.gov/research/research-activities/RaDaR">Rare Diseases Registry Program (RaDaR)</a>, also run by NCATS, is an online resource that provides patient groups with guidance on how to develop registries for rare diseases. Registries can serve as powerful tools for collecting information about patients diagnosed with the same rare disease, communicating new breakthroughs to interested patients, recruiting participants to studies, and supporting families and caregivers through the rare disease journey.</p> <figure id="attachment_28592" aria-describedby="caption-attachment-28592" style="width: 840px" class="wp-caption aligncenter"><a href="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/radar2.jpg?ssl=1"><img data-recalc-dims="1" decoding="async" data-attachment-id="28592" data-permalink="https://circulatingnow.nlm.nih.gov/2024/02/29/archiving-rare-disease-organizations-on-the-web/radar2/" data-orig-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/radar2.jpg?fit=1600%2C1189&ssl=1" data-orig-size="1600,1189" data-comments-opened="1" data-image-meta="{"aperture":"0","credit":"","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"1"}" data-image-title="radar2" data-image-description="" data-image-caption="" data-medium-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/radar2.jpg?fit=300%2C223&ssl=1" data-large-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/radar2.jpg?fit=840%2C624&ssl=1" class="wp-image-28592 size-large" title="Rare Diseases Registry Program (RaDaR)" src="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/radar2.jpg?resize=840%2C624&ssl=1" alt="Screenshot from the Rare Disease Registry Program website." width="840" height="624" srcset="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/radar2.jpg?resize=1024%2C761&ssl=1 1024w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/radar2.jpg?resize=300%2C223&ssl=1 300w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/radar2.jpg?resize=768%2C571&ssl=1 768w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/radar2.jpg?resize=1536%2C1141&ssl=1 1536w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/radar2.jpg?resize=200%2C150&ssl=1 200w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/radar2.jpg?resize=1200%2C892&ssl=1 1200w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/radar2.jpg?resize=840%2C624&ssl=1 840w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/radar2.jpg?w=1600&ssl=1 1600w" sizes="(max-width: 840px) 100vw, 840px" /></a><figcaption id="caption-attachment-28592" class="wp-caption-text">National Center for Advancing Translational Sciences Rare Diseases Registry Program (RaDaR) webpage captured September 6, 2023 | <a href="https://wayback.archive-it.org/21912/20230906145131/https://registries.ncats.nih.gov/">View Archived Pages</a></figcaption></figure> <p>The <a href="https://www.genome.gov">National Human Genome Research Institute (NHGRI)</a> at NIH focuses its work on robust study and treatment of genetically-caused (or affected) conditions through collaboration with scientific and medical communities. Areas of concentration include bioinformatics and computational biology, biology of disease, structure and biology of genomes, science and effectiveness of medicine, and ethical implications of research. The research done at NHGRI continues to improve our understanding of rare genetic diseases and conditions.</p> <figure id="attachment_28594" aria-describedby="caption-attachment-28594" style="width: 840px" class="wp-caption aligncenter"><a href="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NHGRI.jpg?ssl=1"><img data-recalc-dims="1" loading="lazy" decoding="async" data-attachment-id="28594" data-permalink="https://circulatingnow.nlm.nih.gov/2024/02/29/archiving-rare-disease-organizations-on-the-web/nhgri/" data-orig-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NHGRI.jpg?fit=1600%2C741&ssl=1" data-orig-size="1600,741" data-comments-opened="1" data-image-meta="{"aperture":"0","credit":"","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"1"}" data-image-title="National Human Genome Research Institute (NHGRI)" data-image-description="" data-image-caption="<p>National Human Genome Research Insitute (NHGRI) webpage captured December 4, 2023 | View Archived Pages</p> " data-medium-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NHGRI.jpg?fit=300%2C139&ssl=1" data-large-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NHGRI.jpg?fit=840%2C389&ssl=1" class="size-large wp-image-28594" src="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NHGRI.jpg?resize=840%2C389&ssl=1" alt="Screenshot from the National Human Genome Research Institute website showing the DNA Double Helix." width="840" height="389" srcset="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NHGRI.jpg?resize=1024%2C474&ssl=1 1024w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NHGRI.jpg?resize=300%2C139&ssl=1 300w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NHGRI.jpg?resize=768%2C356&ssl=1 768w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NHGRI.jpg?resize=1536%2C711&ssl=1 1536w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NHGRI.jpg?resize=1200%2C556&ssl=1 1200w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NHGRI.jpg?resize=840%2C389&ssl=1 840w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NHGRI.jpg?w=1600&ssl=1 1600w" sizes="auto, (max-width: 840px) 100vw, 840px" /></a><figcaption id="caption-attachment-28594" class="wp-caption-text">National Human Genome Research Insitute (NHGRI) webpage captured December 4, 2023 | <a href="https://wayback.archive-it.org/21912/20231204125347/https://genome.gov/">View Archived Pages</a></figcaption></figure> <figure id="attachment_28596" aria-describedby="caption-attachment-28596" style="width: 400px" class="wp-caption alignleft"><a href="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NORD-full-res-image.jpg?ssl=1"><img data-recalc-dims="1" loading="lazy" decoding="async" data-attachment-id="28596" data-permalink="https://circulatingnow.nlm.nih.gov/2024/02/29/archiving-rare-disease-organizations-on-the-web/nord-full-res-image/" data-orig-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NORD-full-res-image.jpg?fit=853%2C1200&ssl=1" data-orig-size="853,1200" data-comments-opened="1" data-image-meta="{"aperture":"0","credit":"","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"1"}" data-image-title="NORD-full-res-image" data-image-description="" data-image-caption="" data-medium-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NORD-full-res-image.jpg?fit=213%2C300&ssl=1" data-large-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NORD-full-res-image.jpg?fit=728%2C1024&ssl=1" class="wp-image-28596" title="National Organization for Rare Disorders (NORD)" src="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NORD-full-res-image.jpg?resize=400%2C563&ssl=1" alt="National Organization for Rare Disorders poster about Genetic testing for rare diseases." width="400" height="563" srcset="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NORD-full-res-image.jpg?resize=728%2C1024&ssl=1 728w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NORD-full-res-image.jpg?resize=213%2C300&ssl=1 213w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NORD-full-res-image.jpg?resize=768%2C1080&ssl=1 768w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NORD-full-res-image.jpg?resize=840%2C1182&ssl=1 840w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/NORD-full-res-image.jpg?w=853&ssl=1 853w" sizes="auto, (max-width: 400px) 100vw, 400px" /></a><figcaption id="caption-attachment-28596" class="wp-caption-text">National Organization for Rare Disorders (NORD) website captured December 20, 2023 | <a href="https://wayback.archive-it.org/21912/20240528212952/https://rarediseases.org/">View Archived Pages</a></figcaption></figure> <p>In addition to federal support for rare disease research and treatment, there are many high-caliber nonprofit and advocacy organizations doing important work at the local, state, and national level. The <a href="https://rarediseases.org/">National Organization for Rare Disorders (NORD)</a> was established in 1983 and was the first national nonprofit to represent all individuals and families affected by rare disease, and continues to be one of the largest advocacy organizations in the space. NORD supports a wide range of initiatives at both the patient and organization level: disease-specific groups can find information on everything from starting a rare disease organization to creating rare disease registries to advancing research, while individuals can find support through its patient assistance programs, databases of rare disease organizations, information on clinical trials, podcasts, and resource library.</p> <p>Every rare disease journey is uniquely challenging and, at times, might feel isolating. <a href="https://ourodyssey.org/">Our Odyssey</a> is an organization that creates community for young adults who are impacted by a rare or chronic condition. Programs include social meetups, community conversations, storytelling, and arts programs to decrease isolation and build communities of support. Events take place both in-person as well as virtually.</p> <figure id="attachment_28598" aria-describedby="caption-attachment-28598" style="width: 840px" class="wp-caption aligncenter"><a href="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/OurOdyssey2.jpg?ssl=1"><img data-recalc-dims="1" loading="lazy" decoding="async" data-attachment-id="28598" data-permalink="https://circulatingnow.nlm.nih.gov/2024/02/29/archiving-rare-disease-organizations-on-the-web/ourodyssey2/" data-orig-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/OurOdyssey2.jpg?fit=1600%2C897&ssl=1" data-orig-size="1600,897" data-comments-opened="1" data-image-meta="{"aperture":"0","credit":"","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"1"}" data-image-title="Our Odyssey" data-image-description="" data-image-caption="<p>Our Odyssey webpage captured August 30, 2023 | View Archived Pages</p> " data-medium-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/OurOdyssey2.jpg?fit=300%2C168&ssl=1" data-large-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/OurOdyssey2.jpg?fit=840%2C471&ssl=1" class="size-large wp-image-28598" src="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/OurOdyssey2.jpg?resize=840%2C471&ssl=1" alt="Screenshot from the Our Odyssey website about creating community." width="840" height="471" srcset="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/OurOdyssey2.jpg?resize=1024%2C574&ssl=1 1024w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/OurOdyssey2.jpg?resize=300%2C168&ssl=1 300w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/OurOdyssey2.jpg?resize=768%2C431&ssl=1 768w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/OurOdyssey2.jpg?resize=1536%2C861&ssl=1 1536w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/OurOdyssey2.jpg?resize=1200%2C673&ssl=1 1200w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/OurOdyssey2.jpg?resize=840%2C471&ssl=1 840w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/OurOdyssey2.jpg?w=1600&ssl=1 1600w" sizes="auto, (max-width: 840px) 100vw, 840px" /></a><figcaption id="caption-attachment-28598" class="wp-caption-text">Our Odyssey webpage captured August 30, 2023 | <a href="https://wayback.archive-it.org/21912/20230830154119/https:/ourodyssey.org/">View Archived Pages</a></figcaption></figure> <p>Rare diseases can be incredibly difficult to diagnose. This might be due to a scarcity of information altogether or to scattered medical studies that are challenging to locate and derive treatment options from in meaningful ways. The burden of an undiagnosed disease can weigh heavily on individuals and families in many ways—often emotionally, financially, and physically. The <a href="https://wayback.archive-it.org/21912/20231010164222/https:/undiagnosed.hms.harvard.edu/">Undiagnosed Diseases Network</a> is a Harvard-based, NIH-funded research study that brings together clinical and research experts across the country to help patients better understand (and possibly diagnose) their condition. Clinical sites exist across 14 cities in the United States where neurologists, immunologists, nephrologists, endocrinologists, and geneticists work together to provide answers to patients. The site provides information in both English and Spanish.</p> <figure id="attachment_28603" aria-describedby="caption-attachment-28603" style="width: 400px" class="wp-caption alignright"><a href="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/UDN3.jpg?ssl=1"><img data-recalc-dims="1" loading="lazy" decoding="async" data-attachment-id="28603" data-permalink="https://circulatingnow.nlm.nih.gov/2024/02/29/archiving-rare-disease-organizations-on-the-web/udn3/" data-orig-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/UDN3.jpg?fit=863%2C1200&ssl=1" data-orig-size="863,1200" data-comments-opened="1" data-image-meta="{"aperture":"0","credit":"","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"1"}" data-image-title="Undiagnosed Diseases Network" data-image-description="" data-image-caption="<p>Harvard-based, NIH-funded research study Undiagnosed Diseases Network website captured October 10, 2023 | View Archived Pages</p> " data-medium-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/UDN3.jpg?fit=216%2C300&ssl=1" data-large-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/UDN3.jpg?fit=736%2C1024&ssl=1" class="wp-image-28603" title="Undiagnosed Diseases Network" src="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/UDN3.jpg?resize=400%2C556&ssl=1" alt="Screenshot from the Undiagnosed Diseases Network website in Spanish." width="400" height="556" srcset="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/UDN3.jpg?resize=736%2C1024&ssl=1 736w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/UDN3.jpg?resize=216%2C300&ssl=1 216w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/UDN3.jpg?resize=768%2C1068&ssl=1 768w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/UDN3.jpg?resize=840%2C1168&ssl=1 840w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/UDN3.jpg?w=863&ssl=1 863w" sizes="auto, (max-width: 400px) 100vw, 400px" /></a><figcaption id="caption-attachment-28603" class="wp-caption-text">Harvard-based, NIH-funded research study Undiagnosed Diseases Network website captured October 10, 2023 | <a href="https://wayback.archive-it.org/21912/20231010164222/https:/undiagnosed.hms.harvard.edu/">View Archived Pages</a></figcaption></figure> <p>The development of therapeutic interventions for rare diseases has historically faced many barriers. Due to the rarity of conditions, there may be little natural economic incentive for pharmaceutical companies to divert resources toward therapies that might only treat a handful of individuals. As a result, these therapies often became “orphaned” due to lack of funding or corporate interest. The <a href="https://www.govinfo.gov/content/pkg/STATUTE-96/pdf/STATUTE-96-Pg2049.pdf">Orphan Drug Act of 1983</a>—led in large part by NORD—incentivized pharmaceutical companies to develop drugs aimed specifically at treating rare diseases. The act offers tax credits, a waiver of the Prescription Drug User Fee, and extended market exclusivity options to participating drug developers. Today, there are several pharmaceutical companies that are working on treatments for rare conditions, as well as organizations that seek to connect potential patients with research efforts. The web archive contains a selection of both rare-disease-focused drug developers and advocacy groups, such as the <a href="https://alliancerm.org/">Alliance for Regenerative Medicine</a>.</p> <figure id="attachment_28604" aria-describedby="caption-attachment-28604" style="width: 840px" class="wp-caption aligncenter"><a href="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/ARM.jpg?ssl=1"><img data-recalc-dims="1" loading="lazy" decoding="async" data-attachment-id="28604" data-permalink="https://circulatingnow.nlm.nih.gov/2024/02/29/archiving-rare-disease-organizations-on-the-web/arm/" data-orig-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/ARM.jpg?fit=1600%2C869&ssl=1" data-orig-size="1600,869" data-comments-opened="1" data-image-meta="{"aperture":"0","credit":"","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"1"}" data-image-title="Alliance for Regenerative Medicine" data-image-description="" data-image-caption="<p>Alliance for Regenerative Medicine website captured Octover 3, 2023 | View Archived Pages</p> " data-medium-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/ARM.jpg?fit=300%2C163&ssl=1" data-large-file="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/ARM.jpg?fit=840%2C456&ssl=1" class="size-large wp-image-28604" src="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/ARM.jpg?resize=840%2C456&ssl=1" alt="Screenshot from the Alliance for Regenerative Medicine website describing the Alliance." width="840" height="456" srcset="https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/ARM.jpg?resize=1024%2C556&ssl=1 1024w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/ARM.jpg?resize=300%2C163&ssl=1 300w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/ARM.jpg?resize=768%2C417&ssl=1 768w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/ARM.jpg?resize=1536%2C834&ssl=1 1536w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/ARM.jpg?resize=1200%2C652&ssl=1 1200w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/ARM.jpg?resize=840%2C456&ssl=1 840w, https://i0.wp.com/circulatingnow.nlm.nih.gov/wp-content/uploads/2024/02/ARM.jpg?w=1600&ssl=1 1600w" sizes="auto, (max-width: 840px) 100vw, 840px" /></a><figcaption id="caption-attachment-28604" class="wp-caption-text">Alliance for Regenerative Medicine website captured October 3, 2023 | <a href="https://wayback.archive-it.org/21912/20231003121132/https:/alliancerm.org/">View Archived Pages</a></figcaption></figure> <p>NLM will continue to support and grow the <a href="https://archive-it.org/collections/21912">Rare Diseases web archive</a> over time as these websites will continue to evolve and change. By archiving these resources year after year, the web collection will document changes in our understanding of rare diseases thereby giving researchers, scholars, students, and other users a longitudinal view of these important issues.</p> <p>We welcome public recommendations for additional content to include or aspects to consider. Is there an organization you would like to recommend for inclusion in this web archive? If so, please submit recommendations to <a href="mailto:nlmwebcollecting@mail.nlm.nih.gov">nlmwebcollecting@mail.nlm.nih.gov</a>. 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aria-label="Posts"> <h2 class="screen-reader-text">Post navigation</h2> <div class="nav-links"><div class="nav-previous"><a href="https://circulatingnow.nlm.nih.gov/2024/02/22/making-the-greatest-medical-library-in-america-spine-repair/" rel="prev"><span class="screen-reader-text">Previous Post:</span>Making the Greatest Medical Library in America: Spine Repair</a></div><div class="nav-next"><a href="https://circulatingnow.nlm.nih.gov/2024/03/07/maxine-singer-a-life-in-research-and-advocacy/" rel="next"><span class="screen-reader-text">Next Post:</span>Maxine Singer—A Life in Research and Advocacy</a></div></div> </nav> </footer><!-- .entry-footer --> </article> <div id="comments" class="comments-area"> <header class="comments-header"> <h2 class="comments-title"> 2 comments </h2> </header><!-- .comment-header --> <ol class="comment-list"> <li id="comment-88652" class="comment even thread-even depth-1 parent"> <article id="div-comment-88652" class="comment-body"> <footer class="comment-meta"> <div class="comment-author vcard"> <img alt='' src='https://secure.gravatar.com/avatar/e1ae400890157ede86964f72c39d1004?s=56&d=mm&r=pg' srcset='https://secure.gravatar.com/avatar/e1ae400890157ede86964f72c39d1004?s=112&d=mm&r=pg 2x' class='avatar avatar-56 photo' height='56' width='56' loading='lazy' decoding='async'/> <b class="fn">M.J. Tooey</b> <span class="says">says:</span> </div><!-- .comment-author --> <div class="comment-metadata"> <a href="https://circulatingnow.nlm.nih.gov/2024/02/29/archiving-rare-disease-organizations-on-the-web/#comment-88652"><time datetime="2024-02-29T13:06:19-05:00">February 29, 2024 at 1:06 PM</time></a> </div><!-- .comment-metadata --> </footer><!-- .comment-meta --> <div class="comment-content"> <p>This is a great effort – thank you! FYI, the first link to RaDaR creates a 404 Page Not Found message. And linking from the picture of the RaDaR page works but does not allow a search. Going to RaDaR directly works correctly. Again – thanks so much.</p> <div class='jetpack-comment-likes-widget-wrapper jetpack-likes-widget-unloaded' id='like-comment-wrapper-52242398-88652-67b8a7947711a' data-src='https://widgets.wp.com/likes/#blog_id=52242398&comment_id=88652&origin=circulatingnow.nlm.nih.gov&obj_id=52242398-88652-67b8a7947711a' data-name='like-comment-frame-52242398-88652-67b8a7947711a'> <div class='likes-widget-placeholder comment-likes-widget-placeholder comment-likes'><span class='loading'>Loading...</span></div> <div class='comment-likes-widget jetpack-likes-widget comment-likes'><span class='comment-like-feedback'></span><span class='sd-text-color'></span><a class='sd-link-color'></a></div> </div> </div><!-- .comment-content --> <div class="reply"><a rel="nofollow" class="comment-reply-link" href="https://circulatingnow.nlm.nih.gov/2024/02/29/archiving-rare-disease-organizations-on-the-web/?replytocom=88652#respond" data-commentid="88652" data-postid="28583" data-belowelement="div-comment-88652" data-respondelement="respond" data-replyto="Reply to M.J. 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