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Awareness

help spread the word about sickle cell disease

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Education

learn about the impact of sickle cell disease

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Hope

find out about research for new treatments and a universal cure

Interactive and informative monthly sessions that connect SiNERGe CBOs and leaders across the region

SiNERGe CBO Regional ECHO Session

Overview

SiNERGe CBOs host a series of peer-to-peer learning sessions [ECHOs] on a range of topics of interest to the region’s 30+ community-based organizations.  Sessions may focus on initiatives undertaken by the CBOs, including the Shine the Light on Sickle Cell campaign, efforts to connect unaffiliated patients with care, and strategies for collecting data about program activities.  In addition, participant learn about and share best practices that cover a variety of relevant and timely topics such as grant-writing, organizational and board development, transition from pediatric to adult care, technology, and diversity and inclusion. 

  • Intended Audience: CBO leaders and staff throughout the Northeast Region 
  • Frequency/Schedule: Monthly, 3rd Wednesday, 3p – 4p 
  • Point of Contact: Mark Goodwin, Sickle Cell Thalassemia Patients Network, mgoodwin@adelphi.edu

NY CBO ECHO on Stigma in the ED

Overview

One of the most critical and unjust disparities for individuals living with SCD is the stigma they face when coming to an Emergency Department [ED] to treat their pain crisis (Rivlin). The goal of this ECHO project is to reduce sickle cell-related implicit biases of ED providers and staff by incorporating an education module into existing continuing education programs at hospitals throughout NY State. 

  • Intended Audience: CBO leaders and providers in New York
  • Frequency/Schedule: Monthly, 3rd Thursday, 1p – 2p 

Point of Contact: Candice Deler, Candice’s Sickle Cell Fund, cscfinc@gmail.com, 646.436.0477

PA Living Well with Sickle Cell CBO ECHO

Overview

The Pennsylvania Sickle Cell Providers Network (PASCPN) is a state wide network of hospitals and community-based organizations whose mission is to collectively address the needs of those living with sickle cell disease (SCD) as vital partners for whole-person care, improving access to quality care within health systems and the community, expanding opportunities for collaboration across the Commonwealth of Pennsylvania.  The goal of this ECHO project is to strengthen the state-wide network of hospital and community partners, promote collaboration, and to share best and promising practices for increasing access to quality health care and community-based services for every person living with SCD in Pennsylvania, from birth across the lifespan.

  • Intended Audience: Pennsylvania Sickle Cell Providers Network 
  • Frequency/Schedule: Monthly, 1st Friday, 12p 

Point of Contact: Andrea M. Matthews, Founder, Children’s Sickle Cell Foundation, Inc. (CSCF, Inc.),  founder@cscfkids.org  412.853.9883

Register for an ECHO Session

Please complete this form so that your information can be forwarded to the designated ECHO coordinator.

Thank you for your interest!

CBO Echo Session Register
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Frequently Asked Questions

Below you will find answers to the questions we get asked the most about CBO ECHO Sessions

Project ECHO is a peer-to-peer learning platform developed at the University of New Mexico. ECHO stands for Extension for Community Healthcare Outcomes.

The Project ECHO website describes the process:

“ECHO participants engage in a virtual community with their peers where they share support, guidance and feedback. As a result, our collective understanding of how to disseminate and implement best practices across diverse disciplines continuously improves and expands.

Participants learn from one another, as knowledge is tested and refined through a local lens.

This continuous loop of learning, mentoring and peer support is what makes ECHO unique, with a long-lasting impact far beyond that of a webinar, e-learning course or telemedicine care.”

SiNERGe sickle cell providers use the ECHO Model to share best practices about care and treatment of SCD.  Similarly, SiNERGe CBOs (community-based organizations) use the model to share best practices about building organizations that effectively serve the sickle cell community.

In addition to the CBO (Community-Based Organizations) ECHO sessions, the sickle cell providers (physicians) in the region offer ECHO sessions to connect community providers with a multi-disciplinary team of specialists to provide guidance about serving sickle cell patients and their families.

The Johns Hopkins University Sickle Cell ECHO Clinics

Advanced Practice Providers (SAPPORT)
3rd Thursday monthly, 12p – 1p ET
Contact: sinerge@jhmi.edu or 443.287.0608

All Providers
Every Wednesday, 1p – 2:15p ET
Contact: sinerge@jhmi.edu or 443.287.0608

Boston and Rhode Island Pediatric Sickle Cell ECHO
2nd and 4th Thursday monthly, 10a – 11a ET
Contact: klingon@bu.edu

Virginia Commonwealth University Sickle Cell ECHO – All Providers
1st Wednesday monthly, 12:30p – 2:00p ET
Contact: shirley.johnson@vcuhealth.org

Jacobi Medical Center (NY) Quality Improvement ECHO
1st and 3rd Wednesday, 11a – 12p ET
Contact: toni.denicola@nychhc.org

ECHO is supported by HRSA. The views expressed are those of the speaker(s) and participants and do not represent official views of, nor an endorsement by HRSA, Johns Hopkins or the WEPSCF. ECHO is presented for information purposes only. Individuals should seek advice, guidance and direction from their qualified health care provider.

INDIVIDUALS LIVING WITH SCD IN THE U.S.

HOSPITALIZATIONS ANNUALLY DUE TO SCD IN THE U.S.

NEW DRUGS APPROVED BY FDA SINCE 2017

GENE THERAPIES APPROVED BY THE FDA