'A lot of times the solutions we give to people are unrealistic'.

Check out the latest episode of the Being Rare Podcast!
Watch on YouTube buff.ly/4bacAEN
Listen in buff.ly/3UHF6bL

#podcast

I truly enjoyed chatting with madaboutmyeloma about navigating Trisomy 18, life as a care partner, and my dedication to advocacy and education!

'We have to do better at missed opportunities to provide better care'.

Check out the latest episode of the Being Rare Podcast!
Watch on YouTube buff.ly/4bacAEN
Listen in buff.ly/3UHF6bL

#podcast

Join us for 'Women at War: Fighting the Good Fight of Faith' hosted by Real Life Ministries World Outreach in Dallas, GA on Saturday, April 27th and Sunday, April 28th. Get ready to be inspired, uplifted, and equipped!

New episode ALERT! In this episode, I talk about black maternal health and child abuse neglect and prevention. Tune in to hear stats, a personal experience, and resources!

buff.ly/3Wch6P7 Watch the live recording!
buff.ly/4aHtUkC Listen in!

Our paths would have never crossed if not for the work we do! I had the pleasure of sharing the stage with Lindsey Murray and Naomi Knoble, PhD many years ago at a NORD summit! Who knew that we would stay connected, becoming colleagues and friends!

Always great to see you!

Looking forward to discussing Mitigating Challenges in Clinical Outcome Assessments With Multiple Respondents: Sharing Lessons Learned From Across the Clinical Outcome Assessment Program at the 2024 Clinical Outcome Assessment Program Annual Meeting, April 17-18, 2024.

In this episode of the Being Rare Podcast, Sarita talks about the E.WE Foundation's 5th year anniversary, challenges of micro-small nonprofit funding, the Trisomy 18 Newborn Screening Research Survey, the RAREis_ Scholarship, and the 2024 MC Friend Bowl. buff.ly/3VMV2Kn

This year, the #RAREis Scholarship Fund, powered by our friends @everylifeorg and @RAREis___, will be awarding $5,000 scholarships to 88 adults (17+) living with a rare disease. Applications are open until April 22 at rarescholarship.org.
Learn more buff.ly/3QbM7Pp

In this Being Rare Podcast episode, we're challenging the narrative surrounding Trisomy 18 diagnoses. Join us as we discuss the importance of replacing the 'lethal' label and shifting the narrative with understanding, compassion, and support.

Listen now! buff.ly/4aHp8n8

Breaking down Trisomy 18 and its impact on families who receive the diagnosis.
Check out the full episode: buff.ly/3TFgP43

'There is a risk of complications with any pregnancy.' Pregnancy-related deaths occur due to several factors, including negligence. And, especially among black and brown women.

Check out the full podcast episode: buff.ly/4cFhlI8

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Accepting Responses: The E.WE Foundation's Trisomy 18 Newborn Screening Participation Research Survey is for families with living or unalive children who have been diagnosed with Trisomy 18 (Edwards Syndrome). Scan the QR code or click here to complete - buff.ly/3vk6ZMW

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!

Sarita sits down with Kira Dineen, prenatal genetic counselor and genetics podcaster to discuss the information being shared with families who receive a Trisomy 18 diagnosis for their unborn child and how she got started as a podcaster. buff.ly/4crHGcA

Our Trisomy 18 Newborn Screening Participation Research Survey is for families with living or unalive children who have been diagnosed with Trisomy 18 (Edwards Syndrome). Our goal is to capture your understanding of newborn screening. Complete the survey - buff.ly/3vk6ZMW

Check out the One Minute Mondays which offer insight, perspective, and positive reinforcement, hosted by rare disease advocate Sarita Edwards! bit.ly/3OHXr4H
#OneMinuteMondays #RareDisease #RareAndReady

March 18th is #NationalTrisomy18 Awareness Day! 🧬

Check out our #sciencepodcast episode with Sarita Edwards discussing the mission and impact of the E.We Foundation! 💚💙💛

🎙️dnapodcast.com/episodes/2024/…

The E.WE Foundation

We're 2 hours away from our Health Equity Workshop premiere! Register at buff.ly/3v0rxKf to join us!

Today is Trisomy 18 Awareness Day!

Today and every day, we remain committed to raising awareness about Trisomy 18 and supporting families affected by it. Together, we can contribute to creating better health outcomes for families with Trisomy 18.

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