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Mashup Score: 0
Washington, DC, June 2, 2023 – This week, the Senate passed a debt ceiling deal (HR 3746) by a 63-36 vote and which now goes to President Biden for his
Categories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 1List of Rare Diseases | A-Z Database | NORD - 11 month(s) ago
Rare Diseases Archive – National Organization for Rare Disorders
Categories: Latest Headlines, Rare DiseaseTweet-
Did you know that NORD's #RareDisease database includes thousands of rare disease reports with information on symptoms, causes, treatments, clinical trials, resources, and patient advocacy organizations? Explore the database here on our website: https://t.co/u9xRARo7Km
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Mashup Score: 2The Healing Power of Movement: Lena’s Rare Disease Story - National Organization for Rare Disorders - 12 month(s) ago
By Lena Z.
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In today’s community story, Lena, a patient with #MSK and #hEDS, shares her journey to these #RareDisease diagnoses and describes how she became a Pilates instructor to help others with #EhlersDanlosSyndrome benefit from movement in their lives. Read: https://t.co/dflpZvU0Hj https://t.co/vy5At1ETJn
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Mashup Score: 1Latinos & Rare Diseases - National Organization for Rare Disorders - 12 month(s) ago
Leer en español | Download promotional flyer The National Organization for Rare Disorders (NORD) is hosting in-person and virtual listening sessions for Latino/a/x people affected by rare diseases in the United States. NORD has been a leader in rare disease patient advocacy for 40 years; we believe that every person living with a rare disease has a right to their best health and well-being….
Categories: Latest Headlines, Rare DiseaseTweet-
Are you #Latino/#Latina/#Latinx and want to share your experience as a #RareDisease patient, caregiver, or family member? Join our national (virtual) community listening session next Thursday, June 1! Sign up here: https://t.co/k47pxmt93F #EnfermedadesRaras
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Mashup Score: 0Rare Disease Video - Opsoclonus Myoclonus Syndrome - National Organization for Rare Disorders - 12 month(s) ago
The animated videos in NORD’s Rare Disease Video Library provide brief introductions to rare disease topics for patients, caregivers, students, professionals and the public. NORD collaborates with medical experts, patient organizations, videographers and Osmosis to develop the videos, which are made possible by individual donations, educational grants and corporate sponsorships. NORD is solely…
Categories: Hem/Oncs, Latest HeadlinesTweet-
#OMSLife: Thank you for inviting me to represent @MSKCancerCenter #MSKKids at the Opsoclonus Myoclonus Ataxia Syndrome mtg. for caregivers, patients and medical teams. I spoke on Neuroblastoma associated OMAS. Learn more about OMAS at @RareDiseases (NORD) https://t.co/f93hATH9FW https://t.co/V1i0GYBEg0
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Mashup Score: 0Take Action - National Organization for Rare Disorders - 12 month(s) ago
Copyright ©2023 NORD – National Organization for Rare Disorders, Inc. All rights reserved. NORD is a registered 501(c)(3) charity organization. Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical…
Categories: Latest Headlines, Rare DiseaseTweet-
Action needed TODAY: Tell President Biden and Congress to protect Medicaid coverage and reject burdensome work requirements which can jeopardize health insurance coverage for eligible #RareDisease patients; Take Action now: https://t.co/asIH138izY
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Mashup Score: 1Latinos & Rare Diseases - National Organization for Rare Disorders - 12 month(s) ago
Leer en español | Download promotional flyer The National Organization for Rare Disorders (NORD) is hosting in-person and virtual listening sessions for Latino/a/x people affected by rare diseases in the United States. NORD has been a leader in rare disease patient advocacy for 40 years; we believe that every person living with a rare disease has a right to their best health and well-being….
Categories: Latest Headlines, Rare DiseaseTweet-
Are you #Latino/#Latina/#Latinx and living in or around #Houston, Texas? We want to hear your #RareDisease experience as a patient, caregiver or family member. Join our private community listening session TOMORROW, 5/17. Sign up here: https://t.co/i8vI1itAsl #EnfermedadesRaras https://t.co/7rUHhBRUpq
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Mashup Score: 1Recognizing Abbey Meyers, NORD Founder and Mother of a Movement - National Organization for Rare Disorders - 1 year(s) ago
On this Mother’s Day, NORD would like to recognize the rare disease “Mom” who 40 years ago, brought us all together to where we are today.
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We're wishing an extra special #MothersDay to our founder, Abbey S. Meyers, the "mother" of the #RareDisease advocacy movement! Here she is accepting her Lifetime Achievement Award, 40 monumental years later. Learn about Abbey's storied legacy: https://t.co/upJ3ZKj1tN
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Mashup Score: 4NORD 40th - National Organization for Rare Disorders - 1 year(s) ago
40 Years of Impact, Driven by Patients In the late 1970s, Abbey S. Meyers was a working mom from Connecticut on a mission to find treatments for her son with Tourette’s syndrome. She assumed she wasn’t the only parent waging such a battle for their child, and she was right. She ended up becoming the mother of a movement. Abbey formed the coalition of patient advocates who championed the enactment…
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At last week's #LivingRareForum, we learned, laughed, danced, celebrated 40 years of NORD and connected with so many in the #RareDisease community See highlights feat. the NORD Zebra, laughter yoga, and a few stunning panelists! More on NORD's 40th here: https://t.co/i5RGiVIRTN https://t.co/jp0CKYPiqK
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Mashup Score: 3Newborn Screening - National Organization for Rare Disorders - 1 year(s) ago
Screening for RUSP Conditions
Categories: Latest Headlines, Rare DiseaseTweet-
@ncats_nih_gov @US_FDA @DukeHealth Also being discussed: How we're shortening the time to diagnosis, and diagnosing #RareDiseases earlier with expanded #NewbornScreening. Consult NORD's State Report Card here to see how your state measures up on newborn screening: https://t.co/5lPKuPRebi #LivingRareForum
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Read a statement from NORD President and CEO, Peter L. Saltonstall, on the #DebtCeilingDeal and what it means for the rare disease community here: https://t.co/AgCN3afJpU https://t.co/tJCGqhAqWd