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Mashup Score: 13Vermont Rare Disease Advocates Celebrate Passage of New Law Bringing Step Therapy Reform - National Organization for Rare Disorders - 8 day(s) ago
NORD and its Rare Action Network Advocates commend Vermont’s elected officials for prioritizing the needs of 1 in 10 Vermonters living with rare diseases; new
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 3
May 21, 2024 — The National Organization for Rare Disorders (NORD), in partnership with the Tyler James Abizeid Foundation and the MMIHS Foundation, announces
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 9Protecting Patients in State-Regulated Insurance - National Organization for Rare Disorders - 12 day(s) ago
Short-Term, Limited-Duration Health Plans
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 11
WASHINGTON, D.C., May 16, 2024, Today, the House of Representatives’ Energy and Commerce Health Subcommittee voted to advance several bipartisan bills
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 5
Step therapy has been a big challenge for my family. Just this year, three of my immediate family members were taken off medications that were working very well and were required to try other, less expensive medications. Why change what is working and unsettle patients’ quality of life? Step therapy should not be used for patients who are already stable on a medication that is effective for them. My seven-year-old daughter, Kinsley, has digestive issues and is no longer able to eat by mouth or accept
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
In 2023, #Georgia and #NorthCarolina expanded Medicaid access, enabling more people with #RareDiseases to get care. However, 10 states STILL have not expanded #Medicaid eligibility. Is your state one of them? Find out in the NORD State Report Card, here: https://t.co/H1dnarN9HR https://t.co/a0pzWnQuTp
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Mashup Score: 12Get to Know NORD’s New CEO: Four Questions with Pamela Gavin - National Organization for Rare Disorders - 26 day(s) ago
Her fierce approach to patient advocacy combined with her visionary thinking and healthcare background has driven many of NORD’s groundbreaking initiatives over the last decade. To help the rare disease community get to know Pam, we asked her four questions. Un fortunately, I have experienced firsthand the devastation of a child’s life gone too soon from a rare disease. My nephew Trevor was diagnosed at age two and died at the age of nine from metachromatic leukodystrophy, a rare and debilitating genetic
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 6
QUINCY, MA, May 1, 2024—The National Organization for Rare Disorders (NORD) announced today that Pamela K. Gavin has been named CEO effective immediately. She
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
Today, #NORD announces the retirement of our CEO, Peter L. Saltonstall, who served for 16 years following our founder, Abbey Meyers. We're excited to share Pamela Gavin, longtime #RareDisease advocate and NORD visionary, has been named new CEO! Read more: https://t.co/RmNw8VctBi https://t.co/Jg8eILdk19
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Mashup Score: 10The Surreal Reality of Being Undiagnosed: Lori’s Story in Honor of Undiagnosed Day - National Organization for Rare Disorders - 1 month(s) ago
By Lori W.
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 21April Showers Bring May Flowers: Christine’s National Volunteer Month Story - National Organization for Rare Disorders - 1 month(s) ago
By Christine M.
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
Today is #UndiagnosedDay and we're sharing stories from our #RareDisease community members on their #undiagnosed experiences. Christine is NORD's Pennsylvania @RareAction Network Volunteer Ambassador and an undiagnosed patient and parent. Read her story: https://t.co/SUc7pQCCWa https://t.co/UAbH9aziRy
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Mashup Score: 2Genetic Counselor to Camp Counselor: Kate’s Story in Honor of National Volunteer Month - National Organization for Rare Disorders - 1 month(s) ago
By Kate R., MS, CGC
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
Great news for #Vermont: @GovPhilScott just signed the Step Therapy reform bill into law - something our @RareAction advocates have championed for months! Vermont joins more than half of states that have taken action to curb #StepTherapy. Learn more: https://t.co/n6hb4qRVXN