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Mashup Score: 6
WASHINGTON, D.C., September 18, 2024 — Today, members of the House Energy & Commerce Committee unanimously voted to advance out of Committee the Give Kids
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 2
The National Organization for Rare Disorders (NORD) has important information to share with you ahead of Medicare Open Enrollment as two new benefits of the
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
If you are on #Medicare or plan to enroll for 2025, NORD has important information about two new changes that affect the cost of your medications. Learn more ahead of Open Enrollment on October 15: https://t.co/5tVKfJqKnI #InflationReductionAct #OpenEnrollment
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Mashup Score: 5
The National Organization for Rare Disorders (NORD) and the Rare Disease Diversity Coalition (RDDC) have unveiled the findings of a groundbreaking national
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
NEW: Today, NORD and @rarediseasediv1 released the findings of our first-of-its-kind survey of underrepresented #RareDisease patients and caregivers, revealing unique barriers to care that MUST be addressed: https://t.co/Guzel6Qgs5 https://t.co/XvhBpLn2VE
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Mashup Score: 7Beyond Expectations: A Paralympian Equestrian Beats the Odds to Achieve Her Dream - National Organization for Rare Disorders - 6 month(s) ago
By Sydney Collier
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
US #Paralympic #Dressage competitor @sydsparaquest is 1 of <100 people with #WyburnMasonSyndrome. Diagnosed at 7, she wasn't expected to live. Therapeutic horseback riding changed her life and led her to the #Paralympics, the White House, and a new book: https://t.co/feYMS5WMcD https://t.co/QBE1888L8K
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Mashup Score: 5
The National Organization for Rare Disorders (NORD) and the Rare Disease Diversity Coalition (RDDC) have unveiled the findings of a groundbreaking national
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
NEW: Today, NORD and @rarediseasediv1 released the findings of our first-of-its-kind survey of underrepresented #RareDisease patients and caregivers, revealing unique barriers to care that MUST be addressed: https://t.co/Guzel6Qgs5 https://t.co/XvhBpLn2VE
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Mashup Score: 5
The National Organization for Rare Disorders (NORD) and the Rare Disease Diversity Coalition (RDDC) have unveiled the findings of a groundbreaking national
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
NEW: Today, NORD and @rarediseasediv1 released the findings of our first-of-its-kind survey of underrepresented #RareDisease patients and caregivers, revealing unique barriers to care that MUST be addressed: https://t.co/Guzel6Qgs5 https://t.co/XvhBpLn2VE
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Mashup Score: 8Guest Blog: One Mother’s Mission Turns Into a Global Movement for a Cure for MSD - National Organization for Rare Disorders - 7 month(s) ago
By Sarah Cortell Vandersypen, CFRE, Executive Director, United MSD Foundation
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
When 2-year-old Willow was diagnosed with #MSD, her parents were told to take her home and love her until she passed. That didn't happen. Ahead of #MSDWorldDay next week, read about their journey to launching @CureMSD and the state of research today: https://t.co/mLO2iWRgbm
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Mashup Score: 28Congress: Reauthorize the Rare Pediatric Disease Priority Review Voucher Program - National Organization for Rare Disorders - 8 month(s) ago
As many as half of all people living with a rare disease are children, and rare pediatric disease priority review vouchers (PRVs) offer a crucial incentive
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
On behalf of children with #RareDiseases and their caregivers, NORD strongly urges Congress to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) program before the September 30, 2024 deadline. Learn more: https://t.co/Oj0GsOxsSi
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Mashup Score: 8Guest Blog: One Mother’s Mission Turns Into a Global Movement for a Cure for MSD - National Organization for Rare Disorders - 8 month(s) ago
By Sarah Cortell Vandersypen, CFRE, Executive Director, United MSD Foundation
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
When 2-year-old Willow was diagnosed with #MSD, her parents were told to take her home and love her until she passed. That didn't happen. Ahead of #MSDWorldDay next week, read about their journey to launching @CureMSD and the state of research today: https://t.co/mLO2iWRgbm
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Mashup Score: 15Careers | NORD - 8 month(s) ago
Have a career working in a patient advocacy organization or rare disease organization at NORD
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
The National Organization for Rare Disorders (#NORD) is hiring! We have 5 remote/hybrid positions open on our Communications and Marketing team for skilled writers and digital experts with a passion for #RareDisease advocacy. Learn more and apply today: https://t.co/Vfii0opJhs https://t.co/Hz8KuNmtVb
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Exciting day as several NORD priority #RareDisease bills advance out of @HouseCommerce’s markup. Next, the House floor. Learn more about today’s markup and take action to make your voice heard on pending legislation here: https://t.co/btDpcYZ2TK