E.Bell

What a privilege to spend the day with these families from around the world stltoday.com/news/local/met…

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

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-p… via @WSJ

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

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

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

RETWEET to help us find an intern to help organize events, track legislation & assist w/ #raredisease action alerts ow.ly/gGSs30eZhPU

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

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

For parents of kids with rare diseases, new efforts look for a cure at a lower cost wsj.com/articles/on-th… via @WSJ

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

#RareDisease often lives in absences. Today, we give it a voice. #RareDiseaseDay #ilovesomeonerare thisgutsylife.com/2017/03/01/giv…

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

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

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 🔓

Today's the day! God's Servant First: The Life and Legacy of Thomas More open thru 3/31/17. jp2shrine.org/thomasmore

First Belgian Child Euthanized, Slippery Slope Morphs into Cliff truthandcharityforum.org/first-belgian-… 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/her…

Fairfax County Public Schools run the largest school bus fleet in the country (larger than Greyhound!) twitter.com/fairfaxcounty/…

Why do EpiPens cost as much as $600? Congress is pressing for an answer. nyti.ms/2biaZDA