community-based organizations
(CBOs) in the region.
Awareness
help spread the word about sickle cell disease
Education
learn about the impact of sickle cell disease
Hope
find out about research for new treatments and a universal cure
Mission
To gather momentum in the fight against sickle cell disease by fostering connections among community-based organizations in the Northeast region.
Objectives
Support overall SiNERGe project goals of identifying and connecting with providers who serve sickle cell patients in the Northeast region.
Ongoing collaboration among community-based organizations (CBOs) in the region.
Provide access to capacity-building expertise and resources for CBOs.
Work in collaboration with other initiatives (e.g. newborn screening grant) in order to provide comprehensive support to patients and providers
COVID-19 Precautions
The SCDAA Medical Advisory Board recommends vaccinations for individuals living with sickle cell disease.
Community-Based Organizations (CBOs) in the Northeast
Participation in SiNERGe is open to community-based organizations (CBOs) in the Northeast Region. If you are a CBO (or know of one) in the Northeast, and are not listed below, please contact us!
Connecticut
- Citizens for Quality Sickle Cell Care*
Delaware
- Sickle Cell Association of Delaware
District of Columbia
- Faces of Our Children
- Sickle Cell Association of the National Capital Area Inc.
Maryland
- Armstead-Barnhill Foundation for Sickle Cell Anemia
- Sickle Cell Association of Harford and Cecil Counties and the Eastern Shore*
- Christopher Gipson Sickle Cell Moyamoya Foundation
- Maryland Sickle Cell Disease Association*
- William E. Proudford Sickle Cell Fund Inc.
Massachusetts
- Greater Boston Sickle Cell Disease Association*
New Jersey
- Sickle Cell Association of New Jersey*
New York
- Candice’s Sickle Cell Fund^
- New York Sickle Cell Advocacy Network (formerly QSCAN)*
- Sickle Cell Advocates of Rochester^
- Sickle Cell Awareness Foundation Corp International
- Sickle Cell Thalassemia Patients Network*
- Westchester Sickle Cell Advocacy Network
Pennsylvania
- Children’s Sickle Cell Foundation Inc.*#
- SCDAA – Philadelphia/Delaware Valley Chapter*#
- South Central Pennsylvania Sickle Cell Council*#
Puerto Rico
- Anemia Falciforme Sickle Cell Disease en Puerto Rico
Virginia
- Life and Family Foundation Richmond (formerly Living with Sickle Cell RVA)
- Sickle Cell Association Inc.*
*Chapters of the Sickle Cell Disease Association of America (SCDAA)
#Members of the Pennsylvania Sickle Cell Disease Providers Network (PASCDPN)
^Affiliates of Sickle Cell Thalassemia Patients Network (SCTPN)
FAQ about SiNERGe
Learn more about who we are and what we’re doing to gain momentum in the fight against sickle cell disease.
SiNERGe stands for the Sickle Cell Improvement in the Northeast Region through education, a project which is funded by the Health Resources and Services Administration (HRSA). The SiNERGe project is managed by Principal Investigators (PIs) at Johns Hopkins, who work with Site Principal Investigators in thirteen states, the District of Columbia, the U.S. Virgin Islands and Puerto Rico, to improve access to high quality care for sickle cell patients.
Visit the Johns Hopkins site for information about the Principal Investigators and Site Principal Investigators for SiNERGe.
There are four regions in the United States with similar projects. Each region has its own principal investigators, objectives and goals.
SiNERGe is a U.S.-based initiative that includes thirteen states, the District of Columbia, the U.S. Virgin Islands, and Puerto Rico:
- Connecticut
- Delaware
- District of Columbia
- Maine
- Maryland
- Massachusetts
- New Hampshire
- New Jersey
- New York
- Pennsylvania
- Puerto Rico
- Rhode Island
- U.S. Virgin Islands
- Vermont
- Virginia
- West Virginia
Just as the PIs and Site PIs are working together to improve care in the Northeast region, the SiNERGe CBOs are working collaboratively with each other and with the PIs in order to improve their capacity for serving the sickle cell community. CBOs are engaged in a range of activities, including advocacy, fundraising, education, direct services, and outreach. Through SiNERGe CBO, they share best practices across the region.
The William E. Proudford Sickle Cell Fund has been designated as the Lead CBO Coordinator. WEPSCF has responsibility for coordinating the activities of CBOs throughout the northeast region.
SiNERGe aims to work collaboratively with other state-wide and/or regional initiatives in order to better serve the sickle cell community. For example, SiNERGe focuses on providers, while the Newborn Screening Grant focuses on patients. Working in collaboration, the two initiatives can more effectively serve all stakeholders needed to ensure that patients have access to high-quality care throughout the Northeast region.
Contact our office to join SiNERGe CBO. We welcome any CBO serving the sickle community in the Northeast region. There is no fee associated with participating in SiNERGe CBO.
For the Principal Investigators (Physicians, Researchers):
Ms. Bailey House, SiNERGe Regional Collaborative Coordinator
Johns Hopkins
601 N. Caroline Street, 7150A
Baltimore, MD 21287
443.287.0608
bailey.house@jhmi.edu
For Community-Based Organizations:
Ms. Shelley Drasal, SiNERGe CBO Administrative Support
William E. Proudford Sickle Cell Fund Inc.
PO Box 42411
Baltimore, MD 21284
888.893.6735
shelley@wepsicklecell.org
Thank you to our SiNERGe CBO partners!
Our accomplishments have been made possible thanks to the many CBO partners we have worked with over the last 7 years. To find out more about our CBO partners’ work, and to support them directly, please click on their logos below.
INDIVIDUALS LIVING WITH SCD IN THE U.S.
HOSPITALIZATIONS ANNUALLY DUE TO SCD IN THE U.S.
NEW DRUGS APPROVED BY FDA SINCE 2017
THERAPIES CURRENTLY IN PHASE III CLINICAL TRIALS
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