Sickle Cell Community Consortium

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Sickle Cell Community Consortium There are over 200 non-profit Community-Based Organizations (CBOs) for sickle cell disease in the U.S. The Consortium exists to address the needs of the CBOs.

The Consortium was founded in February of 2014 to provide a platform to unify, strengthen and increase the visibility of SCD CBO’s

https://linktr.ee/sicklecellconsortium?utm_source=linktree_profile_share<sid=f09401e1-6038-4a18-8885-ca3b2b13fc86 The Sickle Cell Community Consortium (SCCC) was founded in Februrary of 2014 to provide a platform to unify, strengthen and increase the visibility of sickle cell community-based organizations (CBOs) throughout the country. This Consortium is founded on the belief that a "house divided against itself cannot stand" and a commitment to create an outstanding model of commUNITY and patient engagement. We have developed a unified entity, modeled after the U.N. where the individual needs of each CBO can be identified and addressed as a unit, while maintaining the autonomy of each individual organization. SCCC is not a CBO, nor does it seek to replace the actions or activities of existing CBOs. Sickle cell disease CBOs exist to address the needs of the sickle cell community. Our mission is to assist the CBOs in identifying the needs of their patient population, to aggressively seek funding to address those needs, provide infrastructure support and a platform for collaboration and cooperation between individual CBOs, governmental agencies and pharmaceutical and corporate stakeholders. Our CBO partners span across the country and are actively involved in direct patient services, support services, education, awareness and advocacy. These CBOs collaborate with the Consortium and with each
other on a wide range of projects to benefit the sickle cell community. These projects include, but are not limited to, the development of educational materials and sickle cell toolkits, transition services geared towards the teen
market, bereavement services and funeral cost assistance, medical accountability, legislative calls to action, and the creation of a platform to assist data collection and analysis for patient-reported outcomes and research. With strong commitment to fund-raising, charitable donations and grants, we have built, and will continue to strengthen and grow, a network of patient and advocate-powered community non-profit organizations dedicated to redefining what it means to live with, conquer and overcome sickle cell disease.

🩸 Community, let’s show up for our partner tomorrow!The Sickle Cell Community Consortium invites you to join our partner...
10/09/2026

🩸 Community, let’s show up for our partner tomorrow!

The Sickle Cell Community Consortium invites you to join our partner, Elite Sickle Cell Foundation, for A Sickle Cell Health & Empowerment Symposium, hosted by Elizabeth White and sponsored by GENETIX Biotherapeutics.

Warriors, families, caregivers, and supporters are welcome to connect, learn, and explore health, wellness, education, and resources for individuals and families affected by sickle cell disease.

📅 Tomorrow, Saturday, October 10, 2026
⏰ 10 a.m. Central / 11 a.m. Eastern
💻 Virtual on Zoom
Meeting ID: 526 366 0713
Passcode: H1t2Nq

Their goal is to bring 100 people together for learning, connection, and support. Let’s help them get there!

📲 Share this post, invite someone to join you, and set a reminder. We hope you’ll support our partner and be part of the conversation!

Partners, thank you for joining us at last Friday’s partner meeting! We had more than 91 partners in attendance, and we ...
10/08/2026

Partners, thank you for joining us at last Friday’s partner meeting! We had more than 91 partners in attendance, and we appreciate your time, participation, and commitment to our community. ❤️

Here are your reminders:

📌 **G2: Submit your availability by Friday, October 9, at midnight.**
We need your responses so we can schedule General Assembly Part 2 for October. Select all dates and times you can attend and give the meeting your full attention.

📧 Check your partner email for the private Doodle poll link.

✅ **LEAP: Complete your survey.**
Please complete the Leadership in Education, Advocacy, and Policy form if you haven’t already.
https://ucsf.co1.qualtrics.com/jfe/form/SV_8CYQKryXNDZhoRU

🎥 **Warrior U Live: Tell us you’re interested!**
Interested in Creative Content or Patient Education? Complete the interest form:
https://tinyurl.com/Warrioruliveinterest

💛 **Caregiver Summit: Register and spread the word.**
Join the virtual 2026 Sickle Cell Caregiver Summit, November 13–15, and share this opportunity with caregivers in your community.
https://www.scdcaregivers.org/2026summit

🕊️ **Support Rare Connection in honor of Genesis Jones.**
Her family is continuing the event she started. Dallas-area partners, please join them Saturday, October 17, and help carry her work forward.

Use **UNIQCARE** for 20% off individual tickets through October 10, before prices increase October 11. Vendor space is limited, with an October 10 deadline.
https://tinyurl.com/rareconnections26

👟 **Sickle Smile 5K Fun Run/Walk**
Register, invite your people, and share! Costumes are optional; everyone is welcome to come as they are.
https://tinyurl.com/projectsmile5kfunrun

📌 **ASH registration and pricing:**
https://www.hematology.org/meetings/annual-meeting/registration-information

Already completed your poll and forms? Thank you! No need to submit again.

Nothing For Us Without Us.

Help us carry Genesis Jones’s vision forward. 💜Our late partner, Genesis Jones, created the Rare Connections Dallas Pilo...
10/08/2026

Help us carry Genesis Jones’s vision forward. 💜

Our late partner, Genesis Jones, created the Rare Connections Dallas Pilot Gathering to bring people impacted by rare disease together for connection, encouragement, and support. With her family’s guidance, the event is moving forward in her honor, and the Sickle Cell Community Consortium invites you to support the vision she started.

This gathering welcomes the entire rare disease community, including individuals living with rare diseases, caregivers, families, loved ones, professionals, and supporters.

📅 Saturday, October 17, 2026
🕒 3–6 PM
📍 9850 Walnut Hill Lane, Suite 427
Dallas, TX 75238

Come connect, share experiences, and enjoy a meal catered by Uncle Julio’s, included with attendance.

🎟️ Register by Saturday, October 10, to save 20% on individual ticket types with code UNIQCARE. The discount ends after October 10!

🤝 Vendors, sponsors, partners, and professionals are invited to participate. The deadline for vendor tables, partner registration, and sponsorships is also October 10.

Space is limited to 50 attendees, so please register early.

Register: https://tinyurl.com/rareconnections26

Questions? Contact Sandy Mill at [email protected].

Please share with your networks and help Genesis’s vision continue to bring people together. 💜

10/08/2026
🔴 Our partners are LIVE at the South Carolina Sickle Cell Symposium, and you can join them online now!The Sickle Cell Co...
10/03/2026

🔴 Our partners are LIVE at the South Carolina Sickle Cell Symposium, and you can join them online now!

The Sickle Cell Consortium is proud to share this opportunity with our community. Today’s focus is **Reproductive Health & Sickle Cell Disease**, bringing together patients, caregivers, healthcare providers, and advocates for conversations about care, resources, and policy.

There’s still time to tune in, hear from the speakers, and support the work our partners are doing in South Carolina.

📲 Join here: https://tinyurl.com/SouthCarolinascSYMPOSIUM

All virtual sessions take place in the same Zoom room. Join for a session or stay for the rest of the program!

🚨 Happening TOMORROW, October 3!Our partner, **The B Strong Group**, is hosting the **3rd Annual South Carolina Sickle C...
10/03/2026

🚨 Happening TOMORROW, October 3!

Our partner, **The B Strong Group**, is hosting the **3rd Annual South Carolina Sickle Cell Symposium**, and there’s still time to register!

This year’s focus is **Reproductive Health and Sickle Cell Disease**, bringing patients, caregivers, providers, advocates, and community leaders into the conversation.

Hear from patient, caregiver, and provider panels, plus get updates on policy, research, and health care affecting the sickle cell community.

📅 **Tomorrow, Saturday, October 3, 2026**
🕘 **9 a.m. to 3 p.m.**

Help us support our partner and spread the word. Tag someone who should know about this opportunity!

🔗 Learn more and register: https://thebstronggroup.org/events
📞 Questions? Call 803-715-5999.

SC3 Partners, our Monthly Partner Meeting is today, October 2nd, at 7 p.m. ET / 6 p.m. CT!We’re heading into the last qu...
10/02/2026

SC3 Partners, our Monthly Partner Meeting is today, October 2nd, at 7 p.m. ET / 6 p.m. CT!

We’re heading into the last quarter of the year, and there’s plenty to discuss. Tonight’s conversation will include:

- LEAP
- General Assembly Part 2
- Plans for the last quarter of the year
- Warrior University live/in person

Bring your questions and any updates you’d like to share as we talk through what’s ahead and what partners need to know.

Please check your email for the Zoom link. See you tonight!

Have you ever struggled to speak up about what you need?**Have you ever struggled to speak up about what you need?**Your...
09/30/2026

Have you ever struggled to speak up about what you need?
**Have you ever struggled to speak up about what you need?**

Your voice matters, and so do your needs. Join **Aaliyah Is Healed Foundation tonight** for a virtual support group on **self-advocacy**, featuring guest speaker **Mia Robinson**.

Sickle Cell Awareness Month may be ending, but the need for support, connection, and advocacy continues.

**Today, Wednesday, September 30, 2026**
**6:00 p.m. | Virtual**

[Register here on Eventbrite](https://www.eventbrite.com/e/self-advocacy-sickle-cell-support-group-tickets-2000938295305)

Share this with someone who could use a little encouragement to speak up.

Address

P. O. Box 1195
Atlanta, GA
30028

Opening Hours

Monday 9am - 6pm
Tuesday 9am - 6pm
Wednesday 9am - 6pm
Thursday 9am - 6pm
Friday 9am - 6pm
Saturday 9am - 6pm

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