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Picture of a mother holding her baby while looking at the computer screen on a table. Title: 12 'Unexpected' Ways Telehealth Is Improving Healthcare for Rare Diseases

Picture of a mother holding her baby while looking at the computer screen on a table. Title: 12 'Unexpected' Ways Telehealth Is Improving Healthcare for Rare Diseases

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4y

12 'Unexpected' Ways Telehealth Is Improving Healthcare for Rare Diseases

The COVID-19 pandemic brought to surface many health-related disparities for underserved populations, including patients and families living with a rare disease. Earlier this year, the National Organization for Rare Disorders (NORD) published a COVID-19 Community Survey Report, detailing the multiple struggles for families and patients: almost 30 percent of respondents lost their jobs due to COVID-19, and [...]

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@torireneebateman

Anyone else attending NORD's Living Rare, Living Stronger?

It's my first year attending this virtual forum, and I've noticed more medical professionals and non profits have been featured so far! Any other patient attendees? Shout out in the comments!
#RareDisease #NORD #RareDiseases #Livingrareforum #FamilialHemiplegicMigraine #HemiplegicMigraine #Undiagnosed

4 comments

Story

illustration of different people wearing face masks

illustration of different people wearing face masks

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4y

The Hardest Parts of Rare Disease Life During COVID-19

For all of us, the COVID-19 pandemic is unlike anything we’ve witnessed before. COVID-19 is a new-to-humans coronavirus that can cause severe respiratory infection as well as a variety of other symptoms. Many of those in the rare disease community are already familiar with taking health precautions, like self-isolating or stocking up on medications. Unfortunately, [...]

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RareDiseaseDay 4y

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Community

Celebrating #RareDiseaseDay by wearing blue for Dup15q, a community that means the world to us. Great day that began with #SpecialOlympics bocce ball and a 7-6 win by #TheMighty little leaguers too. We should all live life with the joy they had out there today. #RareDisease #Autism #Parenting #Dup15qSyndrome #Anxiety #MentalHealth #MightyTogether #CheckInWithMe #DistractMe #Epilepsy #NORD

2 comments

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Jemma Rosewater

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@hyperacusis_awareness

RareDiseaseDay 4y

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Today is international rare disease day! #RareDiseaseDay

as someone who has grown up with a rare disorder I feel like the importance of this day could not be overstated. we need to raise awareness in the community and the medical field about people with rare disorders. #RareDiseaseDay #Hyperacusis #NORD #invisableillness #ChronicPain

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Pain 5y

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love this

NO ONE!!!!!#Pain #Zebras #NORD #chronicallymighty #Friends

1 comment

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Kinda disappointed and nervous

My choir teacher announced that they’ll have a charity concert next year and are looking for suggestions. I picked NORD(national organization of rare diseases) and I’m REALLY hoping that he’ll consider it. But I’m graduating this year so… #RareDisease #EhlersDanlosSyndrome #Awareness #NORD

1 comment

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Leslie Krongold, Ed.D.

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@leslie-krongold

Rare Disease

On 2/28 I went with members of my patient community to Senator Dianne Feinstein's office to thank her for her previous support ( she's on the Appropriations Committee and share with her representative information about our disease myotonic dystrophy This weekend I attended a NORD event and learned more about the Orphan Drug Act and met some great patients and caregivers representing other rare diseases I'm feeling a new sense of empowerment #RareDisease #MyotonicMuscularDystrophy #PatientAdvocates #NORD #OrphanDrugAct

1 comment

Story

Denise and her family by the mountains

Denise and her family by the mountains

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Cyclic Vomiting Syndrome

8y

What People Don't See in My Son's Journey With Cyclic Vomiting Syndrome

At 2 weeks old, my first-born, perfect baby boy started projectile vomiting, multiple times per day for days on end. As a new mother, I was worried sick (no pun intended) and took him immediately to his pediatrician. They assured me (a nervous first-time mother) that his “spit up” was merely reflux and provided an antacid. Those first were [...]

Story

young fitness woman runner running on road

young fitness woman runner running on road

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8y

Why I'm Running for Rare in the New York City Marathon

Kate. One of the questions I find myself constantly answering is, “Why would you run that far? I’d rather be sleeping!” I’m usually responding to someone who does not understand how much time and effort it takes during marathon training to wake up every Sunday morning and run 12 – 20 miles. Nevertheless, you’re guaranteed at [...]