Emily's Entourage

21 jul 2016

As 10 principais lições sobre como administrar uma fundação inovadora

Today’s guest blog post was written by Emily and adapted from a speech delivered at the Global Genes and Penn Orphan Disease Center’s Rare Patient Advocacy Symposium. Like so many...

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22 jun 2016

molho sEEcreto: Ingredientes da EE para o sucesso - Destaque para Bronwyn Breitner

Bronwyn Breitner, the big and bold thinker of EE This blog post is part of our sEEcret sauce blog series highlighting some of our most integral Emily’s Entourage team members....

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31 de maio de 2016

Voando alto na Big Apple: Recapitulação do primeiro evento da EE em Nova York!

Emily’s Entourage is truly taking off. There’s no stopping us. How do we know? Because we took to New York City for the first time and – fuggedaboutit Brooklyn! – it...

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26 de maio de 2016

Emily discursa no Doctors 2.0 & You em Paris

This week, Emily is so honored to be bringing the best of Emily’s Entourage to the 6th annual Doctors 2.0 & You, Europe’s premier digital health event and Emily’s very...

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12 de maio de 2016

Por que estou pintando meu cabelo de roxo em maio

From time to time we invite guest bloggers who are part of the EE community to contribute their unique voices to our blog. Today’s blog contributor is Rebecca Fox Starr,...

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09 de maio de 2016

Prepare-se... Prepare-se... Maio é o Mês da Conscientização sobre a Fibrose Cística!

Emily’s Entourage is pulling out all the stops to celebrate National Cystic Fibrosis Awareness Month! Whether you’re a loyal EE supporter or new to this awesome entourage, please take a...

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13 abr 2016

Entrando na "zona" quando você tem um prazo: Os truques de Emily para se inspirar

A guest blog post by Emily on her tricks for inspiring writing creativity and productivity when she’s on a deadline. Anyone who knows me and knows my working style has...

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22 mar 2016

molho sEEcreto: Ingredientes da EE para o sucesso - Destaque para Liza Kramer

Liza Kramer, the Momma Bear of Emily and EE This blog post is part of our sEEcret sauce blog series highlighting some of our most integral Emily’s Entourage team members. The goal...

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02 mar 2016

Emily discursa na Vertex Pharmaceuticals para a Semana das Doenças Raras

For Rare Disease Week, Emily will be taking the message of Emily’s Entourage to Vertex Pharmaceuticals in Boston, Massachusetts. She will use her story as a patient with a rare...

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24 jan 2016

Recapitulação de nossa noite de gala de 2015 com a Emily's Entourage

We’re up in the sky. We’re on cloud nine. We’re over the moon, and it’s all because of that incredible, unforgettable evening on December 5, 2015 when Emily’s Entourage —...

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18 jan 2016

A primeira edição do Emily's Entourage Champions ultrapassou $30K em fundos arrecadados para a Fibrose Cística!

It all started with a small idea to expand our reach and help raise more funds… Emily’s Entourage has so many ambassadors around the country who are true trailblazers. We...

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09 jan 2016

Feliz aniversário de 31 anos, Emily!

Birthdays can be bittersweet around here as we love the chance to celebrate Emily and surround her with love and laughter, but we also simultaneously are forced to face the...

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31 dez 2015

Os 10 melhores de 2015 da EE

2015 was MAJOR. So insanely major that the only way to sum it up was with a gold old top 10 list and an awesome video of highlights at the end. So...

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21 dez 2015

molho sEEcreto: Ingredientes da EE para o sucesso - Destaque para Nick Dinges

Nick Dinges, The Go-To Guy for…. Everything EE Over the coming months, we plan to feature a series of blog posts highlighting some of our most integral Emily’s Entourage team...

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07 dez 2015

Por que gostamos de balões de ar quente?

Ever since the very beginning of Emily’s Entourage- actually, even before there was an Entourage, hot air balloons have been a special symbol for the Kramer-Golinkoff family. You have probably...

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16 nov 2015

O "encontro de mentes" da EE impulsiona novas abordagens ousadas para a terapêutica da FC

Emily’s Entourage convened a Key Opinion Leaders Meeting in Philadelphia on September 9, bringing together world-class scientists to brainstorm new, out-of-the-box approaches to treat Emily’s rare CF mutation and those...

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14 nov 2015

Tão Verdadeiro / Tão Falso: Um guia lúdico para quebrar mitos sobre o evento de gala Evening with Emily's Entourage

In case you haven’t noticed, we’re pretty excited that there is now less than one month until our annual Evening with Emily’s Entourage Gala on Saturday, December 5th! We know...

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26 out 2015

9 lições que mudaram sua vida com a Stanford Medicine X

A couple weeks ago, I had the privilege of speaking at Stanford Medicine X and serving as an ePatient advisor to a new class of ePatients, individuals who are empowered...

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22 out 2015

Faces da FC: um aniversário especial

Here at Emily’s Entourage we are dedicated to bringing you fresh content full of honesty, passion, and information. With excitement, we present the first in a new blog series, “Faces...

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13 out 2015