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Mashup Score: 12Get to Know NORD’s New CEO: Four Questions with Pamela Gavin - National Organization for Rare Disorders - 5 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 - 10 day(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 - 10 day(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 - 12 day(s) ago
By Kate R., MS, CGC
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 8
SACRAMENTO, CA, April 24, 2024—Today, California is one step closer to establishing a Rare Disease Advisory Council (RDAC) to help the 1-in-10 Californians
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
#California is one step closer to establishing a #RareDisease Advisory Council! Earlier this week, the bill to establish an #RDAC, introduced by @AsmRickZbur, passed out of committee, a major milestone. Learn more and take action to move the bill forward: https://t.co/N8CXSUmZCA https://t.co/LLxfwKRd7Y
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Mashup Score: 2
ROHHAD is an acronym for rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H), and autonomic dysregulation (AD). It is a rare, life-threatening syndrome that affects the autonomic nervous system (which controls involuntary actions like breathing and your heartbeat) and the endocrine system. As the name suggests, the key features include dramatic weight gain over a six- to 12-month period in the first 10 years of life, followed by hypothalamic dysfunction, dysregulation of the
Source: rarediseases.orgCategories: General Medicine News, Hem/OncsTweet
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Mashup Score: 7From Runner to Running for Rare Coach: Bill’s Story in Honor of National Volunteer Month - National Organization for Rare Disorders - 16 day(s) ago
Before becoming a NORD Running for Rare coach, I was a runner for over 30 years chasing my own goals, and a coach for 10 years helping other runners chase
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 5Becoming a Catalyst for Change: Sarah’s Story in Honor of National Volunteer Month - National Organization for Rare Disorders - 22 day(s) ago
By Sarah F.
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 10
Trends in Out-of-Pocket Spending and Laws
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
Today NORD celebrates 41 years! 🎉🦓 We look forward to continuing to improve the lives of everyone with #RareDiseases and those who love us by driving advances in care, research, and policy - under the leadership of new CEO, Pamela Gavin! Read more: https://t.co/sWWvMiZTv6 https://t.co/HJrAouRYdj