Thanks so much to Jennifer Shumsky, BSN, RN, CNMAP, PACS, CHCO for being our 200th follower!! It was so great to have your voice heard at our last roundtable. We appreciate your expertise!! Check out the R69 Initiative site here: www.R69initiative.org
R69 Initiative’s Post
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So many things to discuss and so many perspectives to consider!!
Helping Rare Disease Organizations by Immersing myself in their Science and Providing Creative Insights on How to Advance their Missions.
Still time to register for the R69 Initiative Roundtable next week!! Wednesday at 8:30am PT, 11:30am EST, 3:30pm GMT!! Register here: https://lnkd.in/gQ4asuAW
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We're hosting a public roundtable about the undiagnosed code(s) and ways they can be leveraged to improve quality of life for those people living with diagnostic uncertainty. Hope you can join us!! Register Here: https://lnkd.in/gHkd2Bsa
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We provided our most recent update on the R69 Initiative at the International Undiagnosed Day's Virtual Event. Helen W. Hernandez and Sidney Muchemwa begin at 26 minutes but we invite you to watch the full event highlighting amazing work from around the world. Thanks so much to Cederroth Helene for the invitation! https://lnkd.in/gYqNBhtG
International Undiagnosed Day 2024
https://www.youtube.com/
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Discounts for those that work in underserved communities!!
The UDN Data Management Coordinating Center is hosting a virtual educational course titled “Evaluation of Undiagnosed and Rare Conditions” on May 13th 2024. This training program aims to teach methods of undiagnosed patient evaluation to students, clinicians, and researchers so that they can apply them at their own institutions. Register for the course here: https://lnkd.in/gxP5wMvU
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We have over 100 followers!!! Shout out to Sophia Zilber 🌺 for being follower number 100 and such an active and amazing advocate for the rare disease community. Sophia Zilber 🌺 has developed expertise in patient registries and uses her spare time to help others get oriented to the space. Check out her page and check out www.R69initiative.org!
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Welcome to the R69 Initiative!! We envision a world in which diagnosis for people with rare diseases is less arduous and we believe the ICD-10 code R69 "illness, unspecified" could be effectively leveraged to formally identify when someone has an uncertain diagnosis. Ideally, follow-up actions, practices, and policies can be put into place to make the path to diagnose a bit straighter.
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ACMA Certified Nurse Medical Affairs Professional and Prior Authorization Certified Specialist, Certified HIPAA Compliance officer
1wI am so excited to be part of the initiative and such a impressive group.