E.Bell (@EmAFresh) profile picture

E.Bell

@EmAFresh
 Virginia, USA
Joined October 2012
  • Tweets31
  • Following1.2K
  • Followers50
What a privilege to spend the day with these families from around the world stltoday.com/news/local/metr…

Children with rare gene mutation gather in St. Louis as doctors, researchers try to build treatment...

Doctors and researchers are trying to build a diagnostic and treatment guide for GNA01.

stltoday.com
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Children with rare gene mutation gather in St. Louis as doctors, researchers try to build treatment guide stltoday.com/news/local/metr…

Children with rare gene mutation gather in St. Louis as doctors, researchers try to build treatment...

Doctors and researchers are trying to build a diagnostic and treatment guide for GNA01.

stltoday.com
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Greater realization about the need to address PTSD in soldiers has led to recognition of the experience of trauma in parents of children with chronic and life threatening disease wsj.com/articles/for-parents… via @WSJ
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795 rare #epilepsy patient families gave data for this publication 👇 yet the same families would have to pay $40 each to read it. I really look forward to seeing the results, but I'm disgusted at how patient-donated data is sold back at them. @RareEpilepsyNet @PCORI
Nat Rev Neurology (@NatRevNeurol) profile pictureNat Rev Neurology@NatRevNeurol6 Sep 2018
Comorbidities of rare epilepsies: results from the Rare Epilepsy Network jpeds.com/article/S0022-3476…
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Here’s how a press release is supposed to work. We announced a new PerlQuest for GNAO1, which got the attention of a parent advocate thanks to a google alert for GNAO1. Like every ultra-rare disease community, they’re just waiting for someone to take notice. cc @BrittanyMeiling
Image from Ethan Perlstein 1-to-N (@eperlste)
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E.Bell retweeted
CNN (@CNN) profile picture
CNN
@CNN12 Feb 2018
California launches investigation after Aetna medical director admits he never looked at patient records when deciding whether to approve or deny care cnn.it/2EXDzpn
Image from CNN (@CNN)
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RETWEET to help us find an intern to help organize events, track legislation & assist w/ #raredisease action alerts ow.ly/gGSs30eZhPU
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For parents of kids with rare diseases, new efforts look for a cure at a lower cost wsj.com/articles/on-the-way-… via @WSJ

On the Way to a Rare-Disease Cure, Parents Tackle the High Price Tag of Research

When a child is diagnosed with a rare genetic disease, parents are often confronted with the high cost of helping advance research. New efforts aim to get families of every means involved in research.

wsj.com
this is not a partisan statement: taxpayers should know who the president is meeting with in the taxpayer-funded White House. period.
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#RareDisease often lives in absences. Today, we give it a voice. #RareDiseaseDay #ilovesomeonerare thisgutsylife.com/2017/03/01…
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Today I want to remember in my heart all the victims of the Holocaust. May their sufferings and their tears never be forgotten.
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GOP silence yesterday was deafening & inexcusable. Hard to be pro-life & anti-refugee. Surely this is not the great America we all want.
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A nosy traveler's guide to Washington, D.C.'s top-secret spots and the haunts of the city's elite on.wsj.com/2empRNO 🔓
A Traveler’s Guide to Washington, D.C.’s Top-Secret Spots

A Traveler’s Guide to Washington, D.C.’s Top-Secret Spots

Where to find Washington, D.C.’s little-known art collections, underground tunnels and other hidden haunts of the city’s elite

wsj.com
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Today's the day! God's Servant First: The Life and Legacy of Thomas More open thru 3/31/17. jp2shrine.org/thomasmore
Image from Saint John Paul II Shrine (@JP2Shrine)
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First Belgian Child Euthanized, Slippery Slope Morphs into Cliff truthandcharityforum.org/fir… via @TandCForum
We sat down with KOIN TV after Abigail’s kidney transplant – a huge milestone for her and other kids with Potter’s. koin.com/2016/05/23/herrera-…
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Fairfax County Public Schools run the largest school bus fleet in the country (larger than Greyhound!) teapawt.org/fairfaxcounty/status/7…
Fairfax County Government 🇺🇸 (@fairfaxcounty) profile pictureFairfax County Government 🇺🇸
@fairfaxcounty3 Sep 2016
4 Driving Rules When Approaching Stopped School Buses fairfaxcounty.gov/news2/4-si… teapawt.org/fairfaxcounty/status/7… #1stDayFairfax
Image from Fairfax County Government 🇺🇸 (@fairfaxcounty)
Image from Fairfax County Government 🇺🇸 (@fairfaxcounty)
Why do EpiPens cost as much as $600? Congress is pressing for an answer. nyti.ms/2biaZDA
Image from The New York Times (@nytimes)
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Only 40.6% of the world’s working women have a legal right to maternity leave - a critical time for #breastfeeding.
Image from UNICEF USA (@UNICEFUSA)
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Sad news: NBC News confirms former Rep Steve LaTourette (R-OH) passed away today after a battle with pancreatic cancer. He was 62. – at Alexandria, VA
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