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
May 15, 2024
Connecting Unaffiliated Patients to Care
For information, contact Mark Goodwin at mgoodwin@adelphi.edu.
Coming Soon –
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.
There are three CBO ECHO series in the Northeast Region:
SiNERGe CBO Regional ECHO
- Overview: The SiNERGe CBO Collective Impact Initiative hosts a series of peer-to-peer learning sessions [ECHOs] on a range of topics of interest to 30 of the region’s community-based organizations. The first three sessions of 2023 will address Organizational Development and the April session will be a “how to” on organizing Shine the Light community awareness and advocacy events in celebration of World Sickle Cell Awareness Day on June 19. During the remainder of the year, sessions will cover a variety of relevant and timely topics such as reaching unaffiliated patients, transition, 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 NYS
- Frequency/Schedule: Monthly, last Thursday, 1p – 2p
- Point of Contact: Candice Deler, Candice’s Sickle Cell Fund, cscfinc@gmail.com
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, through Project ECHO sessions, promote collaboration, share best and promising practices to increase 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
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
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