Grant Project

Purpose:

The Sickle Cell Disease Association of America, Inc. (SCDAA) works with regionally identified community-based organizations (CBOs) to devise and implement infrastructure that overcomes the social and service access obstacles to linking people with sickle cell disease (SCD) and their families to knowledgeable service providers, a quality medical home, education and counseling support, community facilitators and navigators for unmet needs and resultant comprehensive life quality care.

Program Goal:

The goal of this program is to enhance its existing national infrastructure to serve as the National ‘backbone organization’ forming the Sickle Cell Disease Newborn Screening Program (SCDNBSP) with Regional partner CBOs. This national effort will also serve to enhance the efforts of CBOs in identifying individuals living with SCD and in enrolling those individuals into the SCDAA-developed patient-centered national registry, Get Connected.

Program Objectives:

Through Get Connected and SCDNBSP efforts, CBOs will identify and assess health outcomes of individuals with SCD and their access to quality care, including care coordination and medical homes, patient education, genetic counseling and psychosocial services. Based on this assessment, a national strategy will be developed between SCDAA and CBO partners to promote an increase in the number of individuals with SCD with access to care coordination through medical homes, access to appropriate health care providers, and to increase the use of sickle cell educators/counselors within those partnering regions.

Project Sub-Awardees 2015-2016

Region 2

New Jersey

Sickle Cell Association of New Jersey
Mission:  In concordance with the mission of the Sickle Cell Disease Association of America “to advocate for and enhance our membership’s ability to improve the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions, while promoting the search for a cure for all people in the world with sickle cell disease.” SCANJ is here to help, educate, and advocate in the fight against sickle cell disease.

Region 3

Pennsylvania

Children’s Sickle Cell Foundation
Mission:  To provide social, educational, and economic support for children with sickle cell disease and their families.

Sickle Cell Disease Association of America Philadelphia Delaware Valley Chapter
Mission:  To serve as a vehicle and resource center for the psychosocial and social service needs of children, adolescents, adults and families affected by sickle cell disease. SCDAA/PDVC seeks to develop, manage and allocate resources in partnership with hospitals, charitable organizations community based organizations and social service agencies.

Region 4

Georgia

Sickle Cell Foundation of Georgia
Mission:  To engage, educate, and energize the community to improve the quality of life for people affected by sickle cell disease.

North Carolina

Piedmont Health Services and Sickle Cell Agency
Mission:  To provide outreach, education, screening and case management for people with high-risk health problems.

Region 5

Illinois

Sickle Cell Disease Association of Illinois
Mission:  Sickle Cell Disease Association of Illinois’ (SCDAI) primary mission is to enhance the quality of life for people with sickle cell disease and their families. To effectively achieve this goal, SCDAI acts as an advocate for improved healthcare and services for sickle cell patients by educating and informing the community through outreach programs.

Michigan

Sickle Cell Disease Association of America, Michigan Chapter
Mission:  To maximize the quality of life of individuals living with sickle cell disease.  To enable individuals with sickle cell trait to make informed decisions with respect to family planning.  To provide education and testing for the general public.

Region 7

Missouri

St. Louis Sickle Cell Association
Mission:  The Sickle Cell Association is a not-for-profit organization that strives to diminish suffering and improve the quality of life for those individuals affected by sickle cell disease. We are committed to raising the public’s awareness and providing education to patients, their families, health professionals, legislators and the general public about sickle cell disease, its management and its challenges.

Region 9

California

Sickle Cell Foundation of California
Mission:  To provide education and life-enhancing programs and services to individuals withsickle cell disease, to broaden publicawareness about sickle cell disease and to promote medical research and educationto ultimately find a cure.

Region 10

Oregon

Sickle Cell Anemia Foundation of Oregon
Mission:  To promote awareness of the genetic causes and health effects of sickle cell anemia and related conditions, and to provide leadership aimed at improving the quality of life for people who suffer from this terrible but treatable disease.

Region 2 – State Partners

New York

Queens Sickle Cell Advocacy Network (QSCAN)
Mission:  A deep sense of commitment; it focuses on those with Sickle Cell conditions. We provide a clear sense of direction for families and individuals, enabling them to actively participate in their communities and health care needs.

The Sickle Cell Thalassemia Network
Mission:  To improve the quality of life for individuals and families living with sickle cell disease, thalassemia and other hemoglobin disorders through education, advocacy and support interactions.  To create a community where we can share our experiences as a collective to improve and impact the education an awareness of sickle cell disease, thalassemia and other hemoglobin disorders.

Region 3 – State Partners

Delaware

Tova Community Health, Inc.
Mission:  TOVA Healthcare in association with TOVA Community Health aims to build capacity for research, awareness and access to quality care for persons living with a chronic medical condition(s) like Sickle Cell Disease. Our mission is to provide comprehensive holistic compassionate care services to achieve optimal health outcomes.

Maryland

Maryland Sickle Cell Disease Association, Inc. – Columbia, MD
Mission:  To improve the quality of life for those affected by sickle cell disease by promoting advocacy, education, research and excellent healthcare delivery.

Pennsylvania

South Central PA Sickle Cell Council
Mission:  To partner with the health community to provide support to clients, families and caregivers affected by Sickle Cell Disease and Trait, in 26 PA Counties, through advocacy, public awareness, intervention and education.

Virginia

Sickle Cell Association, Inc.
Mission:  To assist the sickle cell community, especially families with non-medical needs such as support groups, transition, education, access to research, resource sharing, family follow-up; advocacy on the local, state and national levels.  Programs and services are designed to improve the quality of life for individuals living with this debilitating disease.

Region 4 – State Partners

Alabama

Central Alabama Chapter of the Sickle Cell Foundation
Mission:  To enhance the quality of life of individuals and families affected by sickle cell disease through education, advocacy, and support.

Sickle Cell Foundation Greater Montgomery
Mission:  It is our mission to improve the lives of those suffering with the disease, while working closely with individuals and agencies conducting research.

Georgia

Association of Sickle Cell Lower Chattahoochee Regional Support Group
Mission:  Promote awareness of sickle cell disease, educate the community, health professionals and sickle cell clients of the effects of the disease; provide sickle cell testing and referrals of clients to community resources and support sickle cell clients and their families.

North Carolina

Community Health Interventions & Sickle Cell Agency, Inc.
Mission:  Community Health Interventions and Sickle Cell Agency, Inc., is dedicated to addressing various health related challenges that significantly affect our community’s health and wellness. In conjunction with our health and human service initiatives, CHI will provide education, prevention, and implement & support documented best practices for interventions, services, and treatment in our efforts to eliminate health disparities.

South Carolina

James R. Clark Memorial Sickle Cell Foundation
Mission:  To optimize the social, psychological, and physiological well-being of individuals with sickle cell disease and to decrease the incidence of sickle cell disease through genetic screening, counseling, and education.

Tennessee

The Sickle Cell Foundation of Tennessee
Mission:  To provide educational awareness, comprehensive social services, and collective supportive impact to all persons affected by Sickle Cell Disease within our service areas.

Region 5 – State Partners

Indiana

Martin Center – Sickle Cell Initiative
Mission:  To aid and enhance the lives of those affected by Sickle Cell and associated disorders by providing client services, patient and family advocacy, and education.

Ohio

Ohio Sickle Cell and Health Association
Mission:  To provide Education, Advocacy and Support to persons and families affected and at-risk for Sickle Cell Disease through effective approaches to Sickle Cell Services.

Region 9 – State Partners

California

Cayenne Wellness Center
Mission:  To improve the nutritional and mental health of the public. We achieve this mission through education, research, and public awareness initiatives and community outreach programs that promote good nutrition and mental health.

Nevada

Alliance for Childhood Disease dba Children’s Specialty Center of Nevada
Mission:  To advance cures and means of prevention for pediatric catastrophic diseases through research and treatment, while providing access to quality medical care for the uninsured, under insured, and medically indigent children of Nevada with complex medical issues; through a charity care plan, education, research, and advocacy. Consistent with the vision of our founders, that no child be deprived of care based on a family’s inability to pay for services.