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The Sickle Cell Community Consortium is a collaborative effort between Credentialed Community-Based Organizations (CBOs), Sponsored Patient Organizations, Patient and Caregiver Advocates and Community Partners.  For more about Credentialing, visit our CBO Credentialing page.

Breaking the SSickle Cell Cycle Foundation, Inc.


Breaking The Sickle Cell Cycle Foundation Inc., is a non-profit organization that promotes and provides awareness, education and prevention of sickle cell disease within the our community through education and service.

Awareness: Increasing awareness of SCD/SCT through formal and informal educational sessions allow participants to become aware of the disease and the potential effects it can have in their lives and future generations. By providing trait testing, we are able to inform individuals of their SCT trait status and educate them on what that information means to them regarding their health and family.

Delegates: Dr. Lametra Scott, Olivia Ruiz-Branham, Kimberly Blackmon, Chrystal Holmes
State: Tennessee
Email: btsscycle@gmail.com

Association of Sickle Cell LCR


The mission of the association is to provide awareness of sickle cell disease, provide educational opportunities and services to the community to ensure those affected with sickle cell disorders have a better quality of life.
Services include but not limited to: Red Cross Blood Drives, Medical Transportation assistance, inpatient care packages for Sickle Cell clients, Speakers Bureau for various organizations and facilities, Counseling and Educational presentations for clients, families and community members.

Delegates: Lois Williams, Doretha Cannon
State: Georgia
Email: sicklecellcolumbus@gmail.com

Sickle Cell Warriors, Inc.


Sickle Cell Warrior’s Inc., is a non-profit charitable organization dedicated to education, empowerment, and awareness about sickle cell disease. Our mission is to inspire those affected by sickle cell. As of this minute, you are no longer alone. You have us- and we have you. Welcome to the family.

Delegates: Tosin Ola, Tiffany Walsh
State: California
Email: sicklecellwarriors@gmail.com

The Sickle Foundation of Tennessee


The Sickle Cell Foundation of Tennessee(SCFT) is a 501(c) 3 non-profit organization founded in 2008, by the late Dr. Trevor K. Thompson and Cherry N. Whitehead-Thompson. As an educator( Administrator with Memphis City Schools) and sickle cell disease consumer, Dr. Thompson championed the call for advocacy, educational support and social services for citizens impacted by sickle cell disease in Memphis, across the state of Tennessee, and the region of north Mississippi and eastern Arkansas. His efforts have enabled SCFT to provide educational awareness, through direct contact, via television, radio, print, and social media to more than 1,000,000 citizen across the Mid-South area. Our mission is to provide educational awareness, comprehensive social services and collective supportive impact to all person affected by Sickle Cell Disease within our service areas.

Delegates: Reginald French, Derek Renfroe, Lewis Bell, William Terrell, Jr.
State: Tennessee
Email: rfrench@sicklecelltn.org

Kennedy’s Village

A Message from the CEO, Shavonn Burgess

“Bridging the Gap Between Sickle Cell Disease Research and Care.”
Kennedy’s Village works to bridge the gap between Sickle Cell Disease research and care through advocacy and activities within the community. It is our goal to bring additional awareness of Sickle Cell Disease and the importance of having additional funding specific to Sickle Cell Disease research.

Delegates: Shavonn Burgess, Eric Burgess
State: Georgia
Email: info@KennedysVillage.org

Advancing Sickle Cell Advocacy Project Inc.


Advancing Sickle Cell Advocacy Project Inc. (ASAP) was formed in Spring of 2015 for the purpose of advocating, educating and improving the quality of life and health services for individuals living with Sickle Cell Disease (SCD), their families and networks of caregivers affected by sickle cell disease and related conditions, while advocating ongoing research for a cure for SCD. ASAP provides services to the Sickle Cell community in the form of support groups for patient and caregiver, as well as organizing and conducting focus groups to assess community needs and wants in reference to medical care and education. ASAP orchestrates forums, seminars and events for the edification of the SCD and the medical communities at large.The targeted population of ASAP’s efforts is the Sickle Cell community consisting of the patient and their family. ASAP provides services in Miami ­Dade, Broward, and Palm Beach Counties in South Florida.

Delegates: Kemba Gosier, Alma Brown, Monique Favors, Jeffrey Durandis
State: Florida
Email: kgosier@asapbeinformed.org

Life and Family Foundation, VA


The Life and Family Foundation of Virginia is a community-based organizational (CBO) hub for the State of Virginia providing Advocacy, Education, Empowerment, and Partnerships. The hub is for individuals, families, medical practitioners, and caregivers of those with health care problems related to Sickle Cell Disease, a chronic disease with acute, painful debilitating systemic syndrome, characterized by chronic anemia, acute painful episodes, organ infraction, and chronic organ damage often resulting in shorter life expectancy.

Delegates: Tiffany Dews, Indira Merritt,
State: Virginia
Email: LivingWithSCinc@gmail.com

Sickle Cell Association


The Sickle Cell Association supports the sickle cell community while working to eliminate the disease through collaboration on research, education, and resources. The SCA provides monthly support group meeting, case management, disease and trait counseling and limited financial support.

Delegates: Rosemary Britts
State: Missouri
Email: rbritts@sicklecellassociation.org

Bold Lips for Sickle Cell


#BoldLipsForSickleCell is a 501 C3 non profit organization geared towards spreading Sickle Cell awareness and empowering individuals who has the illness. They have become a fresh and relevant movement, intended to put a bold and flattering spotlight on this disease and its community. We plan to continue to building a network of supporters and allies who will help make this disease as well-known and positively endorsed as the likes of breast cancer and other high profile diseases.

The mission of #boldlipsforsicklecell to educate and raise awareness for sickle cell disease through its advocates wearing bold lipstick colors. They are making a loud and boisterous statement which in turn gains attention along with conversations being sparked. They want to infiltrate surrounding communities by hosting events that are geared towards educating and building awareness for SCD.

Delegates: Kimberly Thomas
State: North Carolina
Email: kthomas.boldplus@gmail.com

Atlanta S.C.A.R., INC.


Atlanta S.C.A.R. (Sickle Cell Awareness Ride), is a grassroots organization with the goals of educating Georgians about Sickle Cell Trait (SCT) and Sickle Cell Disease (SCD) , while also raising money to bring communal aid to those who are afflicted with the disease.

Delegates: Lisa Dean-Touray, Logan Dean, Laurie Dean, Art Scott, Tuwanna Mobley
State: Georgia
Email: Info@atlantascar.com



The International Association of Sickle Cell Nurses and Physician Assistants (IASCNAPA) is one of a few organizations composed of nurses, physician assistants, social workers, and other health care professionals dedicated to the care and health outcomes of individuals with sickle cell disease. The association was established in 1990, and at present, has approximately 350 members worldwide. IASCNAPA recognizes its responsibility to maintain high standards in the provision of quality and accessible health care services for individuals with sickle cell disease. IASCNAPA is committed to strengthening the relationship between nurses and physician assistants who care for patients with sickle cell disease.

The majority of IASCNAPA members are nurses and these individuals serve the sickle cell community in numerous ways to include everything from bedside nurses to academia.  One of our major goals is to use the knowledge and experience acquired as professionals working with patients living with sickle cell to contribute to improved community awareness of the needs of individuals with sickle cell disease and their families. We have members across the US and in other countries. Our most recent activities included coordinating sessions at the Sickle Cell Disease Association of America national conference in Baltimore, MD where we recruited speakers and helped to moderate the sessions that were focused on interdisciplinary collaboration in sickle cell disease management. IASCNAPA also co-sponsored a sickle cell awareness walk in Raleigh, North Carolina along with a new sickle cell foundation started by an individual living with sickle cell. We are engaged in the sickle cell community and are committed to educating health care providers as well as individuals and families living with sickle cell disease about this lifelong disease.

Delegates: Dr. Dora Clayton-Jones, Coretta Jenerette, Lori Vick, Dr. Cheedy Jaja
State: Tennessee
Email: Admin@iascnapa.org

Sickle Cell Foundation Support Group

The Support Group addresses the psycho-social/ nutritional issues in coping with Sickle Cell Disease.

Delegate: Parnel Abraham
State: Georgia
Email: parnel.abraham@emoryhealthcare.org

Supporters of Families with Sickle Cell Disease, Inc.



Supporter’s mission is to increase self-efficacy, improve the overall quality of life for patients living with sickle cell and thalassemia, children, adults, and their families within the State of Oklahoma; through systemic changes in patient care, disability policies, education, family support, economic self-sufficiency, awareness, and advocacy.


To increase the education, awareness, and advocacy of sickle cell disease/trait in Oklahoma and highlight the challenges and impact to individuals, families, and communities living with sickle cell/thalassemia disease/trait.


Decrease sickle cell disease in Oklahoma through community education, testing awareness, and advocacy.  Equip individuals, families, and the Oklahoma community agencies with training needed to support, advocate, and educate others on behalf of those affected by sickle cell/thalassemia disease/ trait.

Delegates: Velvet Brown Watts, Jeremiah Watts, Cynthia Brooks, Dr. Sherri Tapp, Lorice Cooper
State: Oklahoma
Email: swithsicklecell@att.net

Sickle Cell Awareness 365, Inc.


Our mission is to bridge the gap between the Sickle Cell community and the community it depends on by advancing the universal knowledge of Sickle Cell disease and Sickle Cell trait through various programs to promote advocacy and education.

SCA365 hosts a podcast, an annual open mic, Cell talk forum, Paint Away the Pain, creative arts with various Sickle Cell camps, and transition workshops with the SCFGA

Delegate: Mia Robinson
State: Georgia
Email: sicklecellawareness365@gmail.com

Sickle Cell Foundation of Alberta


The Sickle Cell Foundation of Alberta (SCFA) is a volunteer-based organization dedicated to creating awareness about SCD and providing support services to patients living in Alberta. It was founded in 2001 by Dr. Ekua Yorke and Dr. Jojo Yorke to help patients deal with their condition.

The SCFA teaches patients coping skills for pain management, advocates for funding of SCD research and provides its members with access to the most current scientific research and information. It is led by a board of directors, consisting primarily of sickle cell patients, health professionals, patients’ parents and caregivers.

Our organization exists to support sickle cell patients, their caregivers and health care professionals in primary and acute care settings. We strive to increase research funding for SCD, and to create awareness and education around Sickle Cell Disease both within the sickle cell community and through our outreach initiatives with the larger community.

Delegates: Dr. Jean Walrond
State: Alberta, Canada
Email: edmonton@ourscfa.org | calgary@ourscfa.org

Sickle Cell Champions Association


S.C.C.A. was formed to invite a male perspective for youth with emphasis for new parents. This perspective is vital to enlighten the communities of Sickle Cell Disease, how it affects the body, and what children may possibly encounter. We strive to be an effective voice for the SCD patient, family member, and male representation within the community. The program, “Champions Mentoring” was created and implemented to ensure we emphasize focus on empowerment, motivation, and overall growth of adolescent males living with SCD.

Delegates: Clayton W. Andrews
State: Georgia
Email: sicklecellchampionsassociation@gmail.com

Journey’s By Grace Global Missions


Our mission is to encourage growth,development and change while promoting hope and faith in God’s word. To be a light in darkness, a voice in the wilderness. Journey’s by Grace is a mission of compassion, a non-profit organization in which the organization is committed and focused to address the social and spiritual need of the community. JBG works actively with groups and organizations to gain funding, collaborations, knowledge, resources and support for the people. Our mission is to share experience and knowledge to help others on their journey of life.

Delegates: Joyce El
State: Florida

Sickle Life


Provide education and information about Sickle Cell Disease to the public to empower them to make informed decisions regarding the condition.
Ensure good health and wellbeing of persons living with Sickle Cell Disease, their family, and caregivers.
Be the foremost Sickle Cell Disease advocacy organisation in Ghana.

Delegates: Emmanuel Kofi
State: Ghana
Email: sicklelifemd@gmail.com

Cayenne Wellness Center & Children’s Foundation


Dedicated to health promotion and disease prevention in children, adolescents, adults and their families diagnosed with sickle cell disease. Their mission is to improve the nutritional and mental health of the public and those diagnosed with sickle cell disease. We achieve this mission through education (our Annual SCD Educational Seminar; our upcoming Provider In-service Training program), research, and public awareness initiatives and community outreach programs (i.e., our Canvassing program that educates the public). We practice the science of helping people make changes in their lifestyle to improve their overall health and quality of life emotionally, physically, and spiritually.

Delegates: Dr. Carolyn Rowley, Dr. Keith Quirolo
State: California
Email: carolyn@cayennewellness.org

Totally Healed Network International, Inc.

Our mission is to bring health, hope and healing to the diseased community by using faith healing and holistic medicine as an alternative to modern medicine. We strive to educate, as well as be an advocate with support of patients, their families and the community.

Delegates: Angela Woods, Courtney Woods, Mary Moore
State: Georgia
Email: totallyhealed17@gmail.com

 Red Stick Sickle Cell Group

CBO focused on assisting individuals living with Sickle Cell Disease to access benefits and resources that allow them to live a full life without limitations. Passing the baton to sickle cell warriors to spread awareness and advocacy around the world.

Delegate: Whitney Carter
State: Louisiana
Email: redsticksicklecell@outlook.com

Beautiful Gems Sickle Cell Foundation

Spread awareness about Sickle Cell Disease, Sickle Cell trait through education, community health fairs, motivational speaking, and advocating locally. To also make connections with other community organizations, schools, and health facilities

Delegate: Raven Cassidone
State: Virginia
Email: Beautifulgems4scd@gmail.com

Sickle Cell Lights of Hope


Sickle Cell Lights of Hope is a patient-led advocacy group aspiring to educate, support, and provide awareness of Sickle Cell Disease in the upstate of South Carolina. This organization has been developed in direct response to patients who are interested in providing a viable resource to aid others currently navigating the many physical, social-economic, and mental intricacies of Sickle Cell Disease. We will expand our reach in the community by developing co-sponsored programs and educational events with intentional partnerships to include local hospital systems, social organizations, and other community influencers.

Our goals are to build awareness of Sickle Cell and inspire advocacy through serving others with compassion and truth. We hope to position ourselves as an invaluable resource that has identified meaningful ways to empower and enlist other catalysts for change and assert a strong sense of hope for the Sickle Cell Community of SC.

Delegates: Stevonna Anderson
State: South Carolina
Email: sclightsofhope@gmail.com

Sickle Cell Association of Texas Marc Thomas Foundation 


We provide numerous services to children, adults and families in Central Texas, San Antonio, the Texas Gulf Coast, and other affected with sickle cell disease and those carrying sickle cell trait. We provide education, research awareness, outreach, support group meetings, assistance and numerous other services.

Delegates: Linda Thomas, Emily O’Shea
State: Texas

 DreamSickle Kids Foundation


Our mission is to #MakeSickleCellPopular by increasing Awareness, educating ,and advocating for long term changes for the SCD population of Nevada to improve Equity and access to care for those affected by SCD while also addressing health disparities.

Delegates: Georgene Glass, Jennifer Riddle, Savone Grafton, Jasmine Grafton
State: Nevada
Email: Ginaglass@dreamsicklekids.org

Strength in Sickle Cell


This community raises awareness to prevent Sickle Cell disease from spreading to the next generation.
Strength in Sickle Cell is a platform for people living with Sickle Cell to interact, express their feelings, find a mentor or mentor someone and make suggestions on things the medical community should do for them, to have better treatment and care.

Delegate: Ethleen Peacock
State: Alabama

Mississippi Sickle Cell Foundation


The mission of the Mississippi Sickle Cell Foundation is to enhance the quality of life for individuals living with sickle cell disease through the support of research, public activities and awareness, and patient/family education.

Delegates: Jeanne Tate, Zakiya Summers, Mary Teresa Walker, Kallie Hargrove
State: Mississippi
Email: mssicklecellfnd@yahoo.com

My Sickle Family Foundation

To support the sickle cell community while advocating for other sickle cell warriors; bringing knowledge and wellness to the community through health initiatives and financial literacy

Delegate: Etta Flanagan
State: Florida
Email: mysicklefamily@gmail.com

DFW Sickle Cell Kids Crew

DFW Sickle Cell Kids Crew strives to create an environment that fosters relationships with others who understand life with Sickle Cell, recognize siblings and children of Warriors as Champions of Awareness in the making, while providing parents with tools, resources, education, and support to build up our Future Generation of Advocates.

DFW Sickle Cell Kids Crew is open to all kids affected by Sickle Cell in the DFW area (or who clinic in the DFW area): kids with Sickle Cell Disease or Trait, siblings or children of Warriors, even friends of Warriors!

We engage with the local Sickle Cell Community through quarterly playdates. We have done everything from playing at the park to paintball and trampoline parks! While the kids play, the parents chat – you could call it a support group…without the support group feel.

Delegates: Jaimee Roque
State: Texas

Sickle International Family Coalition

The vision of the Sickle International Family Coalition (SIFC) is to work with families affected by Sickle Cell Disease and Sickle Cell Trait worldwide to reduce the burden of living with these chronic conditions that show no outward symptoms.

Delegates: Dominique Friend, Tynisha hall
State: Georgia
Email: tynishahall@yahoo.com

The B Strong Group


The B Strong Group was created to support those with sickle cell disease and their caregivers in the Columbia area. We advocate for, empower and uplift our sickle cell warriors by spreading awareness of the disease, educating the community and engaging volunteers.

Delegates: Brenda Green, Patrick Green
State: South Carolina
Email: thebstronggroup@gmail.com

The As One Foundation


The As One Foundation empowers families globally by delivering life-saving sickle cell education.

All As One Foundation events and activities acknowledge sickle cell trait and sickle cell disease as factors existing not independent of each other but because of each other. Sickle disease births are prospectively the result of procreation between two sickle cell trait positive parents and any combination of at least one sickle cell disease parent will certainly result in a sickle cell trait birth at best. In order to increase quality health care and directly address disparities associated with chronic and acute blood conditions, we seek to fill knowledge gaps of patients, caregivers, family, community members, and even health care providers. All-embracing information is provided through in-person and digital delivery methods to empower those of living with, affected by or are caregivers of people of varying sickle cell genotypes.

Delegate: Dr. Tomia Austin
State: Texas
Email: tomia@asonefoundation.org

Carol’s Promise Sickle Cell Foundation


Our mission is to increase the quality of life for individuals living with Sickle Cell Disease by awareness, support, and education. Our events, programs, services, and initiatives are geared around our mission’s three pillars which are education, awareness, and support.

Delegates: Kenya Buckley
State: Texas
Email: info@carolspromise.org

Carol’s Promise Sickle Cell Foundation


Our mission is to increase the quality of life for individuals living with Sickle Cell Disease by awareness, support, and education. Our events, programs, services, and initiatives are geared around our mission’s three pillars which are education, awareness, and support.

Delegates: Kenya Buckley
State: Texas
Email: info@carolspromise.org