Sickle Cell Community Consortium

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 community-based organizations


https://linktr.ee/sicklecellconsoritum 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.

Sickle Cell community, your voice matters now more than ever.If you or your child has undergone gene therapy or a stem c...
02/18/2026

Sickle Cell community, your voice matters now more than ever.

If you or your child has undergone gene therapy or a stem cell transplant (HSCT), this is an opportunity to share what life has truly been like after treatment.

Not just the science.
Not just the headlines.
But the real recovery.
The emotional shifts.
The unexpected challenges.
The victories that deserve to be heard.

An IRB approved study is gathering insights from US based families to better understand the lived experience following transformative therapies.

What to expect
30 minute online survey
60 minute phone interview
$200 thank you payment

Your story can help shape better support systems and resources for warriors and families navigating this path in the future.

This study is led by Beam Therapeutics and supported by Engage Health.
Please note individuals treated in the Beam 101 gene therapy trial are not eligible.

If you think you qualify, you can check eligibility here
https://www.engagehealth.com/survey/LoginCode.aspx?SurveyID=q7KK49m1

Let’s continue moving the needle together 💛

Sickle Cell Warriors and families — we talk a lot about getting access to gene therapy and transplants… but what happens...
02/17/2026

Sickle Cell Warriors and families — we talk a lot about getting access to gene therapy and transplants… but what happens after treatment?

A new IRB-approved study wants to hear directly from US-based families who have experienced gene therapy or HSCT. This is about your recovery, your challenges, your wins, your emotions, your real life.

What’s involved
30-minute survey
60-minute phone interview
$200 thank-you payment for your time

Your lived experience will help create better resources and support for the SCD community moving forward.

Led by Beam Therapeutics and supported by Engage Health.

Note: Those treated in the Beam-101 gene therapy trial are not eligible.

Check eligibility and start here
https://www.engagehealth.com/survey/LoginCode.aspx?SurveyID=q7KK49m1

Sickle Cell Warriors and families — we talk a lot about getting access to gene therapy and transplants… but what happens...
02/17/2026

Sickle Cell Warriors and families — we talk a lot about getting access to gene therapy and transplants… but what happens after treatment?

A new IRB-approved study wants to hear directly from US-based families who have experienced gene therapy or HSCT. This is about your recovery, your challenges, your wins, your emotions, your real life.

What’s involved
30-minute survey
60-minute phone interview
$200 thank-you payment for your time

Your lived experience will help create better resources and support for the SCD community moving forward.

Led by Beam Therapeutics and supported by Engage Health.

Note: Those treated in the Beam-101 gene therapy trial are not eligible.

Check eligibility and start here
https://www.engagehealth.com/survey/LoginCode.aspx?SurveyID=q7KK49m1

02/14/2026

Valentine’s Day can feel heavy for some.
If today reminds you of what you don’t have, we want to remind you of what you DO have.

You have a community.
You have people who see you.
You have warriors and caregivers who understand.

At SC3, we want you to know you are not alone.
You are loved. You are needed. You are valued.

From the Sickle Cell Community Consortium,
Happy Valentine’s Day 🤍

If you’re a US-based Sickle Cell family and you or your loved one has undergone gene therapy or hematopoietic stem cell ...
02/13/2026

If you’re a US-based Sickle Cell family and you or your loved one has undergone gene therapy or hematopoietic stem cell transplant (HSCT), your experience matters more than you know.

You’re invited to take part in an IRB-approved study exploring life after transformative treatment. This research is focused on the real physical, emotional, social, and day-to-day experiences of SCD Warriors and families.

Participants will
• Complete a 30-minute online survey
• Join a 60-minute follow-up phone interview
• Receive a $200 honorarium

Your voice will help shape future education and support resources for the SCD community.

This study is sponsored and led by Beam Therapeutics with support from Engage Health.

Not eligible: Individuals who received gene therapy through the Beam-101 trial.

See if you qualify and share your story here
https://www.engagehealth.com/survey/LoginCode.aspx?SurveyID=q7KK49m1

If you’re a US-based SCD family who has undergone gene therapy or hematopoietic stem celltransplantation (HSCT), you can...
02/11/2026

If you’re a US-based SCD family who has undergone gene therapy or hematopoietic stem cell
transplantation (HSCT), you can take part in a study to better understand the overall
experiences of patients and families. Complete the 30-minute survey and a 60-minute follow-up
interview to receive a $200 honorarium.
You’ll be part of a first-of-its-kind study to gain a better understanding of the physical, social,
emotional, and other experiences of Sickle Cell Disease (SCD) Warriors, who have undergone
gene therapy or hematopoietic stem cell transplant (HSCT), and their family members. The
results of this IRB-Approved research will be used to create educational and support resources.
To find out if you’re eligible and share your voice, visit this link, and click the orange “start”
button to begin.
The study is being sponsored and led by Beam Therapeutics, with support from Engage Health.
Note: SCD Warriors who have received gene therapy through the Beam Therapeutics& #39; trial
Beam-101 are not eligible for this study.

https://www.engagehealth.com/survey/LoginCode.aspx?SurveyID=q7KK49m1

02/10/2026

Unboxing with our Social Media Manager 👀📦

Have you saved the dates? Leadership Summit | April 7–11, registration drops soon and we’ve got BIG things planned this year 🔥

Shoutout to our new partners 🤝 We have more partners than ever, which means greater impact for the sickle cell community ❤️

Learn more at SickleCellConsortium.org we’re just getting started ✨

Tonight is the deadline to Make a Difference and become a partner in impactful work for the sickle cell community 💪🏽🩸Thi...
02/09/2026

Tonight is the deadline to Make a Difference and become a partner in impactful work for the sickle cell community 💪🏽🩸

This is your chance to be in the room where solutions are created, voices are elevated, and real change happens.

✨ Partner Benefits Include:
• Strategizing solutions in the sickle cell community
• Collaborating on projects that directly benefit the SCD community
• Access to the Speakers Bureau
• No fee. No membership dues.

If you care about advocacy, education, and improving the lives of warriors and families, this is for YOU.

🗓 Deadline: February 6 at 11:59 PM EST
🔗 Sign up or renew: https://tinyurl.com/partnerwithsc326

Don’t sit this one out. Be part of the impact.

02/09/2026

Repost from
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Which of these Top 5 Sickle Cell foods already features in your diet? Are there any here you’re going to start eating more of?

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