"There are approximately 7,000 rare diseases affecting an estimated 30 million people in the United States."
The National Organization for Rare Disorders (NORD), the country’s leading voice for the rare disease patient community, is collaborating with Trio Health to leverage its innovative platform to monitor real-world patients. This unique insight will allow physicians, drug manufacturers, regulatory agencies and advocacy organizations to better serve and improve patient outcomes.
This important collection of real-world insights is informed by scientifically validated, patient-reported, patient-experience data collected by NORD's registry community. It was developed in partnership with six patient organizations and features a foreword by Janet Woodcock, MD Director of FDA's Center for Drug Evaluations and Research.
The Power of Patients 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.
To read the press release, please click here.
If you are interested in downloading a copy of this book, please click here.
Caroline Kruse, Alexandra Kruse, Nancy Potthast, Vanessa Boulanger, Allison Seebald, Suzanne Rossov and Kelsey Milligan
Poster Presented at: European Hematology Association (EHA)
Conference dates: June 13, 2019 - June 16, 2019
Kelly Mercier, Lynne Hernandez, Vanessa Boulanger, Allison Seebald, Suzanne Rossov, Kelsey Milligan
Poster Presented at: ASCO
Conference dates: May 31, 2019 - June 4, 2019
Weldon M, Holder J, Rumbaugh G, Smith-Hicks C, Boulanger V, Seebald A, Rossov S, Milligan K, and Radtchenko J.
Poster Presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR)
Conference dates: May 18, 2019 - May 22, 2019
Yale ML, Boulanger V, Seebald A, Rossov S, Milligan K, and Radtchenko J
Poster Presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR)
Conference dates: May 18, 2019 - May 22, 2019
Bodamer O, Levy H, Blakely E, Brown C, Feldman H, Connolly R, and Moseley K, Boulanger V, Seebald A, Rossov S, Milligan K, Radtchenko J
Poster Presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR)
Conference dates: May 18, 2019 - May 22, 2019
Michaelis M, Khoury-Dennis C, Boulanger V, Seebald A, Rossov S, Milligan K, and Radtchenko J
Poster Presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR)
Conference dates: May 18, 2019 - May 22, 2019
Olaf Bodamer, Harvey Levy, Eileen Blakely, Christine Brown, Hilary Feldman, Rhonda Connolly, Kathryn Moseley, Vanessa Boulanger, Allison Seebald, Suzanne Rossov, Kelsey Milligan, Janna Radtchenko
Poster Presented at: SOCIETY FOR INHERITED METABOLIC DISORDERS (SIMD)
Conference dates: April 6, 2019 - April 9, 2019
Weldon M, Holder J, Rumbaugh G, Smith-Hicks C, Boulanger V, Seebald A, Rossov K and Milligan K
Poster Presented at: National Institute of Health (NIH)
Conference dates: February 28, 2019 - February 28, 2019
Mike Michaelis, Christy Khoury-Dennis, Vanessa Boulanger, Allison Seebald, Suzanne Rossov, Scott Milligan and Janna Radtchenko
Poster Presented at: National Organization for Rare Disorders (NORD)
Conference dates: October 15, 2018 - October 16, 2018
Mike Michaelis, Christy Khoury-Dennis, Vanessa Boulanger, Allison Seebald, Suzanne Rossov, Scott Milligan and Janna Radtchenko
Poster Presented at: National Organization for Rare Disorders (NORD)
Conference dates: October 15, 2018 - October 16, 2018
Eileen Blakely, Christine Brown, Olaf Bodamer, Harvey Levy, Hilary Feldman, Rhonda Connelly, Kathryn Moseley, Vanessa Boulanger, Allison Seebald, Suzanne Rossov, Scott Milligan and Janna Radtchenko
Poster Presented at: National Organization for Rare Disorders (NORD)
Conference dates: October 15, 2018 - October 16, 2018
Eileen Blakely, Christine Brown, Olaf Bodamer, Harvey Levy, Hilary Feldman, Rhonda Connelly, Kathryn Moseley, Vanessa Boulanger, Allison Seebald, Suzanne Rossov, Scott Milligan and Janna Radtchenko
Poster Presented at: National Organization for Rare Disorders (NORD)
Conference dates: October 15, 2018 - October 16, 2018
Eileen Blakely, Christine Brown, Olaf Bodamer, Harvey Levy, Hilary Feldman, Rhonda Connelly, Kathryn Moseley, Vanessa Boulanger, Allison Seebald, Suzanne Rossov, Scott Milligan and Janna Radtchenko
Poster Presented at: National Organization for Rare Disorders (NORD)
Conference dates: October 15, 2018 - October 16, 2018
Marc L. Yale, Vanessa Boulanger, Allison Seebald, Suzanne Rossov, Scott Milligan and Janna Radtchenko
Poster Presented at: National Organization for Rare Disorders (NORD)
Conference dates: October 15, 2018 - October 16, 2018
Marc L. Yale, Vanessa Boulanger, Allison Seebald, Suzanne Rossov, Scott Milligan and Janna Radtchenko
Poster Presented at: National Organization for Rare Disorders (NORD)
Conference dates: October 15, 2018 - October 16, 2018
Marc L. Yale, Vanessa Boulanger, Allison Seebald, Suzanne Rossov, Scott Milligan and Janna Radtchenko
Poster Presented at: National Organization for Rare Disorders (NORD)
Conference dates: October 15, 2018 - October 16, 2018
Jill Pollander, Pamela Gavin and Jeremy Broestl
Poster Presented at: National Organization for Rare Disorders (NORD)
Conference dates: October 15, 2018 - October 16, 2018
Mike Michaelis, Christy Khoury-Dennis, Vanessa Boulanger, Allison Seebald, Suzanne Rossov, Scott Milligan and Janna Radtchenko
Poster Presented at: National Organization for Rare Disorders (NORD) 2018
Conference dates: October 15, 2018 - October 16, 2018
