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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 - 27 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 - 28 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 - 1 month(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 - 1 month(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 - 2 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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Mashup Score: 11
NORD’s State Report Card grades states on policies that benefit or jeopardize health care coverage, access, and affordability for people living with rare
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet-
NORD released our 2024 State Report Card grading each US state on policies affecting #RareDisease patients including access to #telehealth, Rare Disease Advisory Councils (#RDAC), prescription drug out-of-pocket costs and more. Learn how your state ranks: https://t.co/RNc6f8N7lf https://t.co/odYP4HoQMp
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Mashup Score: 11National Organization for Rare Disorders | NORD - 2 month(s) ago
NORD is dedicated to supporting education, elevating care, advancing research, and driving policy for rare diseases
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 9Rare Disease Day 2024 - Share an Event | NORD - 2 month(s) ago
Connect through our Rare Disease Day Events page. Share and discover community events. Unite for awareness and support. Join us in making a difference!
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 21Rare Disease Day 2024 - Faces of Rare | NORD - 2 month(s) ago
Faces of Rare: Join our online community wall campaign. Share your story, connect with others facing rare challenges. Unite for awareness!
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
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Mashup Score: 16Rare Disease Day 2024 - Rare Disease Day Events | NORD - 2 month(s) ago
Join NORD on Rare Disease Day! Discover impactful sessions, engaging speakers, and community events. Raise awareness, foster connections, and make a difference. Be a part of the rare disease community’s journey.
Source: rarediseases.orgCategories: General Medicine News, Rare DiseaseTweet
Today, for #NationalVolunteerMonth, we are sharing a story from Shannon, physical therapist and volunteer running coach for NORD #Running4Rare and aunt to a nephew with #Phenylketonuria (#PKU). Read Shannon's story in her words here: https://t.co/auZoRbevkk https://t.co/H0ZgsqvqXQ