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CREDENTIALED PARTNERS

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.

Sickle Cell 101

http://www.sc101.org

Sickle Cell 101 is a 501(c)(3) nonprofit organization that specializes in sickle cell education on social media and other platforms. Our slogan is, “education + awareness” because we strongly believe these two factors are vital contributors to the progression of the disorder, with the end goal of a universal cure.

Through education we are able to equip those affected by sickle cell, around the world, with a comprehensive understanding of the disorder. Equally, by raising awareness, our goal is for sickle cell to become a household name to encourage genetic testing, generate funding, and further research efforts.

No Pain In The Playroom

http://www.nopainintheplayroom.org/

To bring awareness of Sickle Cell in all its forms including, but not limited to Sickle Cell Anemia, Sickle Cell Trait and Sickle Beta Thalassemia . We achieve this by raising funds through various avenues such as Benefit Concerts, Charity Galas, Health Fairs and our Sickle Cell Awareness themed Clothing Line. Through these efforts we will be creating a better quality of life for carriers or those that are affected in anyway by the disease, ensuring them they are not alone in this daily fight, and advocate to those that are unaware so they learn of the pain associated with Sickle Cell Disease and what it can potentially bring.

Inspiring More Minds

http://www.inspiringmoreminds.com/

We are a 501c3 non-profit in the process of fundraising and informing the community about Sickle Cell Disease.  We are raising money to ease the stressful and pain filled lives of persons with Sickle Cell Disease (SCD).  We provide information about SCD by promoting SCD awareness throughout the community.

Kids Conquering Sickle Cell Disease Foundation, Inc

http://kidsconqueringscd.org/

The Mission of Kids Conquering Sickle Cell Disease Foundation, Inc., is to dedicate with compassion to provide education, awareness, advocacy and outreach to improve the quality of life for individuals and families living with sickle cell disease and other hemoglobin disorders.

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Advancing Sickle Cell Advocacy Project Inc.

http://www.advancingsicklecelladvocacyproject.org/

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.

Hope For SCD

http://www.hopeforscd.org/

We are a health literacy NPO started by parents of a child with Sickle Cell Disease (SCD). Based in Denver, CO, we also provide international access to research based medical education materials.

Our mission to bridge the gap between providers and the lay community through research based health literacy tools and programs.

CSC Support Group 4 Kids is a non-profit organization for kids with Sickle Cell. We are here to raise awareness in our community. Our organization will reach over 300 sickle cell survivors in the Sickle Cell Community through social media and different events that we have held and look forward to continuing to host.

The Mission of CSC Support Group 4 Kids is to provide advocacy, awareness, education, outreach, referrals, support, and aid in research for children diagnosed with Sickle Cell Disease.

IASCNAPA

http://www.iascnapa.org/

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.

Supporters of Families with Sickle Cell Disease, Inc.

http://www.sicklecelloklahoma.org/

Mission

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.

Goal

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.

Vision

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.

The As One Foundation

http://www.asonefoundation.org/

Mission Statement: 

To educate and increase awareness of sickle cell trait while encouraging youth to achieve their dreams in the face of life’s challenges.

Sickle Cell Natural Wellness Group Inc.

http://scnwg.com/

(SCNWG), a 501(c)(3) non-profit organization in August 2010. The mission of SCNWG is to support health advocacy and build global awareness for Sickle Cell Anemia. Our dedication is to better the lives of those living with Sickle Cell Anemia and the Sickle Cell trait through education and healthy lifestyle choices. SCNWG reaches out not only to people with sickle cell but also others living with life threatening diseases with the simple fact that proper nutrition can result in a healthier lifestyle. The group gives back by visiting churches, homes, schools & hospitals delivering health foods, wellness supplies and holistic wisdom. The group also spreads the word through poetry, art, music, collaborations, and participating/hosting events

Rare Foundation Alliance

https://globalgenes.org/

We are pleased to partner with Global Genes as part of the RARE Foundation Alliance as an extension of the Consortium mission to exchange best practices and cultivate an environment of collaboration with the entire rare disease community.