Global healthcare advocacy network for families affected by Trisomy 18 (Edwards Syndrome) and other rare and complex medical conditions.
Huntsville, AL
Joined March 2019
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- Following214
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The E.WE Foundation retweeted
Today, one of the questions we were asked was what we thought needed to happen to cause change in the medical field…
I jokingly said “burn it down” while being partially honest about it but my answer was simple, we have to stop the respectability politics in medicine.
ALT Picture of a group of people speaking in front of others in an audience. A white woman is standing behind a podium on the left side of the photo (panel moderator) then there are three individuals sitting down, facing the audience. The white woman on the far left is holding a mic and speaking, she is wearing a respirator, pink blazer, blue top and maroon pants. Behind the speakers on the screen, a slide is projected on a large white screen. From top to bottom it says: The E.WE. Foundation/LEAP Advocacy Summit Stories that shift systems: advocacy through lived experience. Below are pictures of each of the four speakers with names/titles below that.
The E.WE Foundation retweeted
"When you tell patient stories, you are letting patients set the tone ... [it] can influence whether people receive support, whether research gets funded and whether laws change,” Sarita Edwards of @EveryoneIsWe told journalists. nationalpress.org/topic/stor…
The E.WE Foundation retweeted
Excited to speak at the 24th Annual Fall Social Work Conference hosted by the University of Alabama School of Social Work today on Best Practices in Advocacy for Medically Complex Families. I’m grateful for the opportunity to share space and elevate conversations!
The E.WE Foundation retweeted
Today’s One Minute Monday is about invisible illness—the kind of struggle that doesn’t always show up on the outside. If you’ve ever been told “But you don’t look sick,” this one’s for you. Tune in for a 60-second reminder that compassion matters—every day. #BeRare
The E.WE Foundation retweeted
.@SaritaEdwards of @EveryoneIsWe
was told her son would die in utero - when he was born alive they were told that medical intervention was not worth it
The E.WE Foundation retweeted
Register now! us02web.zoom.us/webinar/regi…
This online briefing is sponsored by @PTCBio. NPF is solely responsible for its content.
The E.WE Foundation retweeted
Health reporters, register now to get your questions answered by an @HRSAgov doctor, @SaritaEdwards of @everyoneiswe and journalist @BijalPTrivedi during this webinar digging into rare diseases and newborn screenings. nationalpress.org/training/n…
The E.WE Foundation retweeted
I attended and spoke at the 4th Annual Patient Advocacy Summit hosted by the University of Notre Dame. It was great to see some of our former interns. Thank you, Barbara Calhoun and Katrina Conrad, for the invite and the Fighting Irish for a great game day tailgate experience! – at Notre Dame, IN
The E.WE Foundation retweeted
Join the E.WE Foundation's 2024 LEAP into Advocacy Virtual Summit on June 27, at 10am CST! The theme is Innovation & Collaboration: Charting the Path Forward for #RareDisease Advocacy.
Visit @EveryoneIsWe and register today at theewefoundation.org/leapsum…
#EdwardsSyndrome #Trisomy18
The E.WE Foundation retweeted
NBTTTP Let's talk about Trisomy 18 with guest Sarita Edwards #trisomy
@EveryoneIsWe
The E.WE Foundation retweeted
Grateful to share the stage with these ladies at the Rare Disease Summit to talk about forming unique partnerships, multi-stakeholder relationships, non-transactional collaborations, mutually beneficial partnerships, ineffective collaborations, and so much more! Here's to 2025!
The E.WE Foundation retweeted
March 18th is #NationalTrisomy18 Awareness Day! 🧬
Check out our #sciencepodcast episode with @SaritaEdwards discussing the mission and impact of the E.We Foundation! 💚💙💛
🎙️dnapodcast.com/episodes/2024…
@EveryoneIsWe
The E.WE Foundation retweeted
Today is Trisomy18 Day ... Trisomy 18 is also known as Edwards Syndrome ..
Read all about Edwards Syndrome on here:
The Chromosome 18 Registry & Research Society - @Chromosome18Reg (chromosome18.org/trisomy-18/)
The E.WE Foundation - @EveryoneIsWe (theewefoundation.org/trisomy…)
The E.WE Foundation retweeted
Happening tomorrow - join us as we dive into the unique experience of being Black with a rare disease.
We will provide insights, share stories, and offer practical tips we can all use to raise awareness and further our collective pursuit of #healthequity. bit.ly/4blrs4j
The E.WE Foundation retweeted
Join us on February 14th at 1:00 PM EST for a meaningful discussion about the unique challenges Black individuals face when navigating the #raredisease space. Discover ways we can collaborate to improve these experiences. Register here: bit.ly/4blrs4j
#healthequity
The E.WE Foundation retweeted
"I’m a huge champion, a huge advocate for removing assumptions. Just don’t assume you know anything. Even if you’ve done some research ahead of time, walk in with a clean slate," said @SaritaEdwards, CEO & President of the @EveryoneIsWe Foundation. nationalpress.org/topic/rare…
The E.WE Foundation retweeted
Last month, our Know Your Family Health History Implementation Grant recipients discussed the resources they designed to educate diverse populations about the importance of knowing your family's health history. Watch here: bit.ly/46qDAxb
#RareAndBlack #WellChildCenter
The E.WE Foundation retweeted
Let's prioritize #selfcare together! Tune in on Tuesday, December 12th at 1:00 PM EST as we share practical tips and strategies to help you nurture your well-being. Click here to register today: bit.ly/3Naq6ii
#SelfCareMatters #selfcareisntselfish
The E.WE Foundation retweeted
Use these resources as a guide to kick-start meaningful #familyhealthhistory conversations this holiday season! Click the link in our bio to learn more! #familyhistory #familyhealth #familyleader
Empower your health journey this holiday season by learning the importance of knowing your family's health history and how to initiate these conversations. Use the link in our bio to access these resources. @GlobalGenes @rarediseasediv1 #familyhealth
The E.WE Foundation retweeted
Empower your health journey this holiday season by learning the importance of knowing your family's health history and how to initiate these conversations. Use the link in our bio to access these resources. @GlobalGenes @rarediseasediv1 #familyhealth