E.Bell

[Blythe Bernhard @blythebernhard]

What a privilege to spend the day with these families from around the world https://t.co/UGWasKsYSk

[St. Louis Post-Dispatch @stltoday]

Children with rare gene mutation gather in St. Louis as doctors, researchers try to build treatment guide https://t.co/T1m6YRPY9A

[Amy Dockser Marcus @AmyDMarcus]

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
https://t.co/0XP30MRZD1 via @WSJ

[Ana Mingorance @CNSdrughunter]

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

[Ethan Perlstein 1-to-N @eperlste]

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

[CNN @CNN]

California launches investigation after Aetna medical director admits he never looked at patient records when deciding whether to approve or deny care https://t.co/dsy0vESxGq

[RDLA @RareAdvocates]

RETWEET to help us find an intern to help organize events, track legislation & assist w/ #raredisease action alerts https://t.co/T3g6PVJ7pL

[Dr. Amy Adams @NINDSdirector]

Another great year for the #NINDS #Nonprofit Forum! Working together to fund best #research to prevent & cure neuro diseases #NPForum17

[NINDS @NIH_NINDS]

NINDS welcomes nonprofit leadership to the @NIH campus for the Progress through Partnership: The NINDS 2017 Nonprofit Forum! #NPForum17

[E.Bell @EmAFresh]

For parents of kids with rare diseases, new efforts look for a cure at a lower cost https://t.co/EjLJQsPB45 via @WSJ

[Jake Sherman @JakeSherman]

this is not a partisan statement: taxpayers should know who the president is meeting with in the taxpayer-funded White House. period.

[ThisGutsyLife @ThisGutsyLife]

#RareDisease often lives in absences. Today, we give it a voice. #RareDiseaseDay #ilovesomeonerare https://t.co/7iWlaZRdkY

[Pope Francis – ARCHIVE @Pontifex266Arch]

Today I want to remember in my heart all the victims of the Holocaust. May their sufferings and their tears never be forgotten.

[Stephen Bell @BellStephenA]

GOP silence yesterday was deafening & inexcusable. Hard to be pro-life & anti-refugee. Surely this is not the great America we all want.

[The Wall Street Journal @WSJ]

A nosy traveler's guide to Washington, D.C.'s top-secret spots and the haunts of the city's elite https://t.co/sIBoXxi7JR 🔓

[Saint John Paul II Shrine @JP2Shrine]

Today's the day! God's Servant First: The Life and Legacy of Thomas More open thru 3/31/17. https://t.co/utZX50hxuE

[E.Bell @EmAFresh]

First Belgian Child Euthanized, Slippery Slope Morphs into Cliff https://t.co/1z9yQcLHMS via @TandCForum

[Jaime Herrera Beutler @HerreraBeutler]

We sat down with KOIN TV after Abigail’s kidney transplant – a huge milestone for her and other kids with Potter’s.
https://t.co/Fxm0e1cXGL

[E.Bell @EmAFresh]

Fairfax County Public Schools run the largest school bus fleet in the country (larger than Greyhound!) https://t.co/JNAVrllw5s

[Fairfax County Government 🇺🇸 @fairfaxcounty]

4 Driving Rules When Approaching Stopped School Buses https://t.co/P045KUPpZ2 #1stDayFairfax

[The New York Times @nytimes]

Why do EpiPens cost as much as $600? Congress is pressing for an answer. https://t.co/0DUEiJF0z0