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Dennis OConnor

Consortium Last Month Seeks Context For Undiagnosed Patients - 0 views

  • September 20, 2016 | About a year ago, Boston Children’s Hospital launched its second CLARITY challenge. CLARITY Undiagnosed focused on six patient families searching for a diagnosis. Alongside the challenge, a documentary is being filmed, driven by Katia Moritz, a Florida psychologist who is dealing with her own undiagnosed disease. And last month another piece of the puzzle fell into place: the UnDx Consortium met in San Diego to try to put context around these diseases.
  • Doug Jamison, co-organizer of the UnDx Consortium
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    "September 20, 2016 | About a year ago, Boston Children's Hospital launched its second CLARITY challenge. CLARITY Undiagnosed focused on six patient families searching for a diagnosis. Alongside the challenge, a documentary is being filmed, driven by Katia Moritz, a Florida psychologist who is dealing with her own undiagnosed disease. And last month another piece of the puzzle fell into place: the UnDx Consortium met in San Diego to try to put context around these diseases."
Dennis OConnor

UnDx Consortium - 0 views

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    The UnDx Consortium The UnDx Consortium™ is an initiative of precision medicine technology companies and scientists to explore how a multidisciplinary approach to precision medicine can provide information and answers for patients with undiagnosed diseases. is an initiative of precision medicine technology companies and scientists to explore how a multidisciplinary approach to precision medicine can provide information and answers for patients with undiagnosed diseases.
Dennis OConnor

Home | Chasing the Cure Live TV Documentary? - 0 views

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    "Stop Suffering in Silence You've been to hundreds of appointments yet you still don't have any answers. Sound familiar?" The series focuses on patients who suffer from undiagnosed, misdiagnosed or uncured medical issues. There are ten weekly 90-minute episodes.
Dennis OConnor

UnDx Consortium - U N D I A G N O S E D - 0 views

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    "The UnDx Consortium™ is an initiative of precision medicine technology companies and scientists to explore how a multidisciplinary approach to precision medicine can provide information and answers for patients with undiagnosed diseases. "
Dennis OConnor

iHope Genetic Health - 0 views

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    "iHopeTM Genetic Health (iGH) will eliminate the barriers to genomic insights for tens of thousands of individuals across the globe each year by addressing access to high-quality clinical whole genome sequencing (cWGS) as well as education and support. Leveraging contributions of genomic sequencing technology from Illumina and donations from philanthropists and technology and logistics partners, iGH will provide awards of reagents and, where necessary, sequencers and software to enable genomic testing across the globe. iGH will provide cWGS and patient support services for undiagnosed individuals in low and middle income countries1 (LMICs) and low-to-moderate income2 (LMI) households across the globe and in the United States (US) respectively. Over time iGH will develop in-country, sustainable solutions for communities with little to no access to genomic care."
Dennis OConnor

Success in Rare Diseases, Part I: - 0 views

shared by Dennis OConnor on 24 Jan 21 - No Cached
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    Recommended by Tyler Orion: Understanding the Rare Disease Ecosystem "Rare diseases (RDs) are different from more common ones, often presenting special challenges for patients, physicians, caregivers, payers, and pharma companies. Those differences and challenges are mostly a consequence of rarity (of patients, experts, data, resources, etc.) and the typically high disease burden. "
Dennis OConnor

Made Visible: The Podcast - Harper Spero - 0 views

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    "The goal of Made Visible is to help people living with invisible illnesses feel less alone as they strive to create a "normal" life. It also aims to create a new awareness of how friends, family, and others can be sensitive and supportive to people who live with invisible illnesses - especially when most people have no idea what's appropriate or helpful, and don't know where to turn for answers. "
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