Sickle Cell Community Consortium

04/18/2026

The sickle cell community understood the assignment ✨

We stepped out at the 10th Annual Leadership Summit and had to tap in for a FIT CHECK with some of the most influential advocates, content creators, and voices in our community 🔥

From style to presence… it’s more than what we wear. It’s confidence, leadership, and showing up as who we are in every room we walk into.

Huge thank you to Novo Nordisk for your support and to Mia Robinson for tapping in and representing on the industry side 💼✨

Because when we show up… we show OUT.

04/17/2026

UPDATE: Both Focus Groups are now full. Thank you to everyone that signed up. Keep an eye out for more opportunities to share your knowledge and experiences.

Living with sickle cell means managing more than what people can see. Your voice matters, and your experience can help shape better pain management support for the community. 💛

The Sickle Cell Consortium, in partnership with UCSF and the University of Florida, is inviting adults 18+ living with SCD to join a virtual focus group discussion on pain management and study participation.

✨ 1 to 2 hour virtual session
✨ $75 for participation
✨ Limited space available

📅 April 20 or 21, 2026
🕕 6 PM to 8 PM EST

Your story could help improve future care and research for others living with sickle cell.

Register today: https://tinyurl.com/sc3focusgroup26

Questions? Coretta.Jenerette@ucsf.edu

04/16/2026

The accuracy!!! Take care of yourselves Warriors!! Our next big trip is in July - California here we come.

04/14/2026

Had the honor of sitting down with Alexandra Phillips from the Sickle Cell Foundation of Georgia at the 10th Annual Leadership Summit ✨

She stopped by to kick it with us and it was truly a pleasure getting to connect, learn, and hear more about the incredible work she’s doing for the sickle cell community. Conversations like this remind me just how powerful this space is when passionate people come together with purpose.

Grateful for leaders like her who continue to show up, serve, and make a lasting impact 💛

04/13/2026

04/13/2026

During the 10th Annual Leadership Summit, we took a moment to honor two incredible leaders whose impact on the sickle cell community will never be forgotten.

Dr. Eckman was presented with a Lifetime Achievement Award for his unwavering dedication to providing compassionate, stand up care to so many warriors over the years. His work has not only treated patients… it has touched lives, built trust, and set a standard for what true care should look like.

We also honored Representative Omari Crawford for over a decade of commitment to the sickle cell community. His leadership and persistence have helped move HB 330 forward, bringing us one step closer to meaningful policy change as it now awaits the Governor’s signature in Georgia.

This moment was bigger than awards. It was about recognizing legacy, sacrifice, and the power of people who choose to show up for our community again and again.

We do not take this work lightly. And we do not take these moments for granted.

To both of these gentlemen… thank you for your dedication, your leadership, and your heart for the sickle cell community.

04/12/2026

Day 2 of 2… and we closed out the SCD Unified Action Forum with purpose. ✨

What started as conversation turned into direction.
What was shared turned into strategy.
And what we felt turned into action.

We aren’t just sitting in a room… we are focused on building solutions.
Real steps. Real Advocates. Real change.

Because our community deserves more than being heard… we deserve to be respected, protected, and properly cared for.

And this is only the beginning.

04/12/2026

Day 1 of 2 at the SCD Unified Action Forum is complete… and the impact is already undeniable. ✨

We brought together patients, caregivers, healthcare providers, and industry professionals all in one room with one shared goal… better treatment and care for every sickle cell warrior.

But we made one thing clear, we are not here to just talk about problems.

Because talking without action is like bruising the tree…
It may look like something is being addressed, but the root is still untouched.

We are here to get to the root.

To create real solutions
To build guidelines that truly support our community
To turn lived experiences into actionable change

Because thousands of warriors have horror stories…
and we are not all wrong.

Our voices are valid.
Our experiences are real.
And together, we are pushing for the kind of change our community deserves.

Day 1 was powerful… and we’re just getting started.

04/11/2026

1 of the SCD Unified Action Forum is officially underway ✨

In partnership with the Sickle Cell Disease Coalition, we are bringing voices from across the nation into one room with one goal… real change.

This is where conversations turn into action
Where lived experiences shape real solutions
And where our community speaks up about what we need to see differently

This space is intentional. This space is powerful. This space is necessary.

Because change does not happen in silence… it happens when we come together, stand firm in our truth, and advocate for better.

Let’s continue to use our voices, share our stories, and create solutions that will move the sickle cell community forward.

04/11/2026

The Digital Studio at the 10th Annual Leadership Summit was more than just a setup… it was a full professional experience 🎥✨

This is what it looks like when we stop just talking about content and actually create it.

Lights. Camera. Strategy. Confidence.

We didn’t just teach creative content… we gave our community the space to step into it, own their voice, and show up like the leaders they are.

Because when you look like a professional, you feel like a professional… and that’s when everything shifts.

This is how we elevate the patient voice.

04/11/2026

Day 4 of the 10th Annual Leadership Summit 🎤✨

Yesterday was all about PRESS DAY… and the room was powerful.

We learned directly from voices across media, radio, TV, magazines, and more—those who are shaping narratives and amplifying stories on a larger scale. And they poured into us.

From understanding how to show up in media to owning our stories as advocates, it was a day full of elevation, exposure, and real insight.

As some of our speakers and attendees began heading out, we are so grateful for every gem, every connection, and every moment shared.

Now we step into the final day of the Summit while also entering the next phase—our Convening/UAF.

We’re not slowing down… we’re building on everything we’ve learned.

Let’s finish strong 💼🔥

04/10/2026

🚨 Important Announcements 🚨

As we continue an impactful day at the 10th Annual Leadership Summit, here are a few key updates you don’t want to miss:

🍽️ Lunch cards will be distributed at 1 PM
Make sure you pick up your lunch card before heading to lunch. We will still be gathering and enjoying lunch together in the main room as usual.

🎁 Prizes will be given away today
But remember… you MUST be in the room to receive your prize 👀

🎥 Media Notice
If you plan to record, stream, or capture content with intent, you MUST be signed up as MEDIA or INFLUENCER. This is required.

We have so many powerful sessions still ahead, and the energy in the room is only getting stronger. Stay engaged, stay present, and don’t miss what’s next.

Let’s keep going 💼✨