{"id":59019,"date":"2019-06-03T09:33:54","date_gmt":"2019-06-03T13:33:54","guid":{"rendered":"https:\/\/rarediseases.org\/nord-and-trio-health-publish-new-book-to-provide-critical-patient-insights-into-the-burden-of-living-with-and-treating-rare-diseases\/"},"modified":"2023-02-09T14:53:58","modified_gmt":"2023-02-09T19:53:58","slug":"nord-and-trio-health-publish-new-book-to-provide-critical-patient-insights-into-the-burden-of-living-with-and-treating-rare-diseases","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-and-trio-health-publish-new-book-to-provide-critical-patient-insights-into-the-burden-of-living-with-and-treating-rare-diseases\/","title":{"rendered":"NORD AND TRIO HEALTH PUBLISH NEW BOOK TO PROVIDE CRITICAL PATIENT INSIGHTS INTO THE BURDEN OF LIVING WITH AND TREATING RARE DISEASES"},"content":{"rendered":"

Real-world evidence and compelling case studies bring to life the challenges facing <\/span><\/i>the estimated 30 million Americans fighting to live better with rare disorders<\/span><\/i><\/p>\n

Washington, DC, June 3, 2019\u2014<\/b>The National Organization for Rare Disorders<\/span>\u00ae<\/span> (NORD), the leading independent nonprofit organization representing the estimated 30 million Americans living with rare diseases, has collaborated with Trio Health, a leading provider of real-world patient data and analytics, to publish a new book entitled <\/span>The Power of Patients: Informing Our Understanding of Rare Diseases<\/i><\/b><\/a>. This important collection of real-world insights is informed by scientifically validated, patient-reported, patient-experience data collected by NORD\u2019s registry community. It was developed in partnership with six patient organizations, and features a foreword by Janet Woodcock, MD, Director of FDA\u2019s Center for Drug Evaluation and Research. <\/span><\/p>\n

\u201cAt NORD, our<\/span> priority is to create real change and accelerate progress for the rare disease community. By working at the intersection of research, policy, and education, we demonstrate the power and possibility of patient-reported, real-world evidence,<\/span>\u201d said Peter L. Saltonstall, President and CEO of NORD. \u201cCreated in collaboration with Trio Health, <\/span>The Power of Patients<\/i><\/b> amplifies the experiences of individuals and families living with rare diseases, and demonstrates the importance of registries and natural history data in helping to shape the way the rare disease landscape is navigated by patients and their physicians.\u201d<\/span><\/p>\n

By sharing stories, celebrating community-driven teamwork and exhibiting data from NORD\u2019s registry community, <\/span>The Power of Patients<\/i><\/b> aims to illustrate the promise and potential of longitudinal natural history studies. <\/span><\/p>\n

\u201cOur goal is to help shed light on the entire patient journey,\u201d said Brent Clough, CEO of Trio Health, which has been providing similar real-world data on more common diseases since 2013. \u201cWe are proud to partner with NORD and fill a knowledge gap that can ultimately improve the lives of people with rare diseases.\u201d<\/span><\/p>\n

Data on the natural history of rare diseases can inform the design of efficient clinical trials, helping reduce the length and cost of drug development and contribute to clinical programs and therapies that meaningfully reflect the needs of the community. As Janet Woodcock, MD, notes in the book\u2019s foreword, \u201cNatural history registries also subserve the enormous benefit of enabling people with rare diseases to find each other and to come together to access their collective experience. Additionally, drug developers who are planning clinical trials often consult with patients with the disease to be targeted, who may best know what is feasible to do in a clinical trial, what might not work for certain patients, and may even be able to suggest patients for a trial or participate themselves.\u201d<\/span><\/p>\n

The Power of Patients<\/i><\/b> highlights the critical importance of patient participation in registries and how essential natural history data for rare diseases is to the research and development of new treatments. With 90% of the more than 7,000 rare diseases still without an FDA-approved treatment, that is progress vital to the lives of the millions of Americans affected by rare diseases.<\/span><\/p>\n

To obtain a copy of <\/span>The Power of Patients<\/i><\/b>, please contact\u00a0<\/span>research@rarediseases.org<\/span><\/a>.<\/span><\/p>\n

 <\/p>\n

## #<\/span><\/p>\n

About the National Organization for Rare Disorders<\/b>\u00ae<\/b> (NORD)<\/b><\/p>\n

The National Organization for Rare Disorders (NORD)\u00a0is the leading independent advocacy organization representing all patients and families affected by rare diseases.\u00a0NORD is committed to the identification, treatment and cure of the more than 7,000 rare diseases, of which approximately 90 percent are still without an FDA-approved treatment or therapy. Rare diseases affect 25-30 million Americans. More than half of those affected are children.<\/span><\/p>\n

NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research and providing patient and family services for those who need them most.\u00a0NORD is made strong together with over 280 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community. Learn more at <\/span>www.rarediseases.org<\/span><\/a>.<\/span><\/p>\n

About Trio Health<\/b><\/p>\n

Trio Health\u2019s mission is to improve the quality of care in patient outcomes through coordinating the efforts of all patient care stakeholders. Their first-of-its-kind Multi-Disease Platform (MDX) that tracks patients throughout the course of their treatment, giving pharmaceutical\/biotechnology companies, specialty pharmacies and physicians access to information and opportunities that simply don\u2019t exist anywhere else. Learn more at <\/span>www.triohealth.com<\/span><\/a>. <\/span><\/p>\n

Media Contacts<\/b><\/p>\n

For NORD:<\/span><\/p>\n

marketing@rarediseases.org<\/a>
\n203-304-7258<\/span><\/p>\n

 <\/p>\n

For Trio Health:<\/span><\/p>\n

Brad Miles<\/span>
\n<\/span>Solebury Trout<\/span>
\n<\/span>bmiles@troutgroup.com<\/span><\/a>
\n646-513-3125<\/span>
\n<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

This collection of real-world insights is informed by scientifically validated, patient-reported data collected by NORD\u2019s registry community.<\/p>\n","protected":false},"author":1,"featured_media":12683,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","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":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[190,192,505,504,193],"tags":[1084,244,1275,1470,1978,1746,1923,225,1980,1754,1976,243,1979,1977,1076],"class_list":["post-59019","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-news","category-patients-members","category-patient-stories","category-press-releases","category-research","tag-brent-clough","tag-fda","tag-food-and-drug-administration","tag-iamrare","tag-janet-woodcock-md","tag-natural-history-study","tag-natural-history-study-data","tag-nord","tag-nord-registry-community","tag-patient-registry","tag-patient-registry-data","tag-peter-l-saltonstall","tag-the-power-of-patients","tag-the-power-of-patients-informing-our-understanding-of-rare-diseases","tag-trio-health"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59019","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59019"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59019\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12683"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59019"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59019"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59019"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}