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Mashup Score: 7Undiagnosed Day: Medical Students Work to Change Rare Disease Curriculum - National Organization for Rare Disorders - 11 day(s) ago
The students’ journey began at NORD’s 2022 Breakthrough Summit, which they attended as members of NORD’s Students for Rare program. Their discussion centered
Source: rarediseases.orgCategories: General Medicine NewsTweet
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Mashup Score: 2
Autoimmune Pulmonary Alveolar Proteinosis (aPAP) is a rare lung disorder affecting approximately seven people per million. The disease affects individuals of all races, geographic regions, gender, and socioeconomic status. It has been diagnosed in individuals from 3 to 90 years of age. To share community perspectives on this rare disease, the National Organization for Rare Disorders (NORD) is proud to partner with the PAP Foundation to organize and host a virtual, externally led Patient-Focused Drug
Source: rarediseases.orgCategories: General Medicine NewsTweet-
On Feb. 5, join the largest virtual gathering of the #Autoimmune Pulmonary Alveolar Proteinosis (#aPAP) community for a Patient-Focused Drug Development meeting hosted by NORD & @PAP_Foundation. Register now: https://t.co/QzGkDxCvBL #PulmonaryAlveolarProteinosis #PAP… https://t.co/kuDeLATk01 https://t.co/zXDC2w3RjZ
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Mashup Score: 4Navigating Adversity Through Writing, an Interview with Chris Anselmo - National Organization for Rare Disorders - 22 day(s) ago
Chris Anselmo is a writer, coach, and advocate who is passionate about resilience and personal growth. Through his newsletter “Hello, Adversity,” he explores
Source: rarediseases.orgCategories: General Medicine NewsTweet-
Writer, coach, and #NORD community member with limb-girdle muscular dystrophy type 2B (#LGMD2B), Chris Anselmo shares how writing helped him process, grow, and connect with others after his diagnosis: https://t.co/xhJqZUvzh9 In our interview, he opens up about the impetus for
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Mashup Score: 2
Autoimmune Pulmonary Alveolar Proteinosis (aPAP) is a rare lung disorder affecting approximately seven people per million. The disease affects individuals of all races, geographic regions, gender, and socioeconomic status. It has been diagnosed in individuals from 3 to 90 years of age. To share community perspectives on this rare disease, the National Organization for Rare Disorders (NORD) is proud to partner with the PAP Foundation to organize and host a virtual, externally led Patient-Focused Drug
Source: rarediseases.orgCategories: General Medicine NewsTweet-
On Feb. 5, join the largest virtual gathering of the #Autoimmune Pulmonary Alveolar Proteinosis (#aPAP) community for a Patient-Focused Drug Development meeting hosted by NORD & @PAP_Foundation. Register now: https://t.co/QzGkDxCvBL #PulmonaryAlveolarProteinosis #PAP… https://t.co/kuDeLATk01 https://t.co/zXDC2w3RjZ
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Mashup Score: 3Rare Disease Day 2024 - Faces of Rare | NORD - 3 month(s) ago
Faces of Rare: Join our online community wall campaign. Share your story, connect with others facing rare challenges. Unite for awareness!
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
Who will you #ShowYourStripes for on #RareDiseaseDay? 🦓 Behind every face is an extraordinary story, and no two are the same. Share your story or a dedication for someone else on NORD's "Faces of Rare" dedication wall: https://t.co/kw1T4JhENj https://t.co/KrprUXdhCK
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Mashup Score: 0Rare Disease Day 2024 - Share an Event | NORD - 3 month(s) ago
Connect through our Rare Disease Day Events page. Share and discover community events. Unite for awareness and support. Join us in making a difference!
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
What are your plans to celebrate #RareDiseaseDay where you live? 🦓 Tell us in the replies or send us a message about your #RareDisease event or activity here: https://t.co/YzVX43vFkt https://t.co/NN6lUaCf8L
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Mashup Score: 3National Organization for Rare Disorders (NORD) Issues New Report on Lifesaving Newborn Screening Programs - National Organization for Rare Disorders - 3 month(s) ago
February 10, 2025, Washington, D.C. — The National Organization for Rare Disorders (NORD®) today published a new report on the critical role that leftover
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
#NewbornScreening residual dried blood spots are critical to the functioning of newborn screening programs & #RareDisease research, but controversy & unclear legal/ethical guidelines may affect their continued use. NORD outlines the issue in a new paper: https://t.co/SapHW5XWBQ https://t.co/gBF2ilnuWN
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Mashup Score: 8Hack Rare: Engaging the Next Generation of Rare Disease Innovators - National Organization for Rare Disorders - 3 month(s) ago
We are a team of Harvard undergraduates who participated in last year’s Harvard Rare Disease Hackathon, sponsored by the National Organization for Rare
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
This team of @Harvard undergrads won "Most Novel Solution" at last year's Rare Disease #Hackathon sponsored by NORD! Read about their solution for #CharcotMarieTooth patients and how YOU can join the 2025 Hackathon on March 1: https://t.co/K97q0sC9bf #CMT4J #Harvard… https://t.co/HlNPAp0Nkg
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Mashup Score: 4Donate to NORD - Give Today! - 3 month(s) ago
Americans are living with a rare disease. That’s about 30 million of our loved ones, friends, colleagues, and neighbors. Across the more than 10,000 rare diseases, fewer than 5% have treatments. Support NORD in improving the lives of those impacted by rare disease. For over 40 years, NORD has driven progress in rare disease patient care, policy and research. Your donation will enable us to provide and develop life-saving resources that help families navigate a rare diagnosis, access financial services,
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
More than 30 million Americans live with a #RareDisease, and roughly half are children. This #RareDiseaseDay, your gift to NORD helps provide the care and support they need and deserve. Donate today: https://t.co/N1weDbARRz https://t.co/9NsmNS6Vlo
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Mashup Score: 19Rare Disease Day 2024 - Faces of Rare | NORD - 3 month(s) ago
Faces of Rare: Join our online community wall campaign. Share your story, connect with others facing rare challenges. Unite for awareness!
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
Who will you #ShowYourStripes for on #RareDiseaseDay? 🦓 Behind every face is an extraordinary story, and no two are the same. Share your story or a dedication for someone else on NORD's "Faces of Rare" dedication wall: https://t.co/kw1T4JhENj https://t.co/KrprUXdhCK
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This #UndiagnosedDay, read about how NORD #StudentsForRare are changing how rare disease diagnosis is taught in medical school: https://t.co/PgXgiVq0yY Great work from @GUMedicine and @PennMedicine! -- #RareDisease #RareDiseases #Undiagnosed #Georgetown #Penn #MedSchool https://t.co/tJ06KMM7OQ