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Mashup Score: 7
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
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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 - 4 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 - 11 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
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Mashup Score: 5How Volunteering with NORD Changed My Life: Shannon’s Story for National Volunteer Month - National Organization for Rare Disorders - 15 day(s) ago
By Shannon J. PT, DPT, OCS
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 1Telehealth - National Organization for Rare Disorders - 16 day(s) ago
Both the federal government and state governments have the power to regulate aspects of telehealth including health provider licensure requirements,
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 9Volunteering as a Medical Student: Eric's Story in Honor of National Volunteer Month - National Organization for Rare Disorders - 21 day(s) ago
By Eric W.“Please don’t forget about me” were some of the last words a leprosy patient told me during my most recent trip to Ecuador.
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 11Share Your Story - National Organization for Rare Disorders - 26 day(s) ago
NORD invites you to share your story. Join the individuals and families who have contributed their personal accounts of living with rare diseases. Alone we are rare. Together we are strong! In order to submit a story, please review the story-telling tips and campaign guidelines to see what opportunities we currently have, then proceed with submitting your story by using the form at the bottom of this
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 6NORD Member List - National Organization for Rare Disorders - 1 month(s) ago
Since our inception in 1983, NORD has maintained the highest level of transparency in how we are structured and how we represent the rare disease community. Our reputation for leading with integrity – and with an unbiased patient voice – has been developed over three decades of meaningful action on behalf of individuals affected by rare disease. NORD is known and respected on Capitol Hill and…
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
NORD welcomes our new Member Organization, the @ddx3x Foundation! The #DDX3X Foundation connects families, resources, and the medical community to advance research for a cure to this rare genetic disorder, #DDX3Xsyndrome. Learn more about NORD's members: https://t.co/csDlnhbVRM https://t.co/X0ObVbel2Q
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#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