Networking California for Sickle Cell Care: The Center for Inherited Blood Disorders and the Sickle Cell Disease Foundation (SCDF) established a network of sickle cell disease centers in the local health jurisdictions of Alameda, Fresno, Kern, Los Angeles, Sacramento, San Bernardino, and San Diego to provide access to specialty care and improve quality of care for adults with sickle cell disease; support workforce expansion for coordinated health services; conduct surveillance to monitor disease incidence, prevalence, and other metrics; create a public awareness campaign; and provide fiscal oversight of the resources.
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Pacific Sickle Cell Regional Collaborative: The Center for Inherited Blood Disorders (CIBD) and the University of California San Francisco Benioff Children’s Hospital, Oakland (UCSF) are leading the Pacific Sickle Cell Regional Collaborative (PSCRC), which engages expert sickle cell disease (SCD) clinicians, health departments, community-based organizations (CBOs), health professions associations, federal government partners, public health policy, and epidemiology throughout 13 states.
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In this Edition of the Sickle Cell Connections Newsletter, Learn About:
- PSCRC & NCSCC Regional Updates
- National Updates
- Clinical Education
- Resources - Recorded Webinars
- Sickle Cell Employment Opportunities
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PSCRC & NCSCC REGIONAL UPDATES:
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Judy Cavazos, PhD, UCSF Benioff Children’s Hospital Oakland presented at an international conference, Annual Sickle Cell and Thalasemia (ASCAT) on "The importance of Neuropsychological Assessment for Adults".
To learn more about ASCAT, click here
To learn more about Dr. Cavazos presentation, please email Judith.Cavazos@ucsf.edu
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Jessica Groesbeck, RN, UCSD San Diego Hillcrest – NCSCC SCD Clinic, is conducting infusion center education for UCSD staff focusing on nurse comfort with administering pain medicine for patients with sickle cell disease in UCSD’s 3 infusion centers (Hillcrest, Encinitas, La Jolla).
For any questions, please contact Jessica Groesbeck at jgroesbeck@health.ucsd.edu
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The Sickle Cell Disease Foundation’s food pantry locations in Los Angeles and Ontario are up and running! Individuals with SCD or caregivers of persons with SCD may be eligible for this food program. Click this link to sign up.
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The 8th Annual Pacific Sickle Cell Regional Collaborative Government Partners Meeting convened on February 4, 2022. The purpose of the meeting was to enhance the momentum of the 13 state HRSA supported Pacific Sickle Cell Regional Collaborative via engagement with Regional Health and Human Services (HHS) Partners. Over 60 people attended including Federal HHS leaders from Regions 6,8,9,10; PSCRC and NCSCC clinicians; and key stakeholders from state and federal government, SCD community-based organizations and researchers. Topics of discussion included CMS Innovation Center’s Strategic Refresh, HRSA SCD & Newborn Screening Priorities 2022-2027, CDC SCD Surveillance fostering HRSA Priorities, COVID-19 Vaccine Access Grant: Leveraging PSCRC CBOs, National Alliance of Sickle Cell Centers, Clinical Training Innovation in Sickle Cell - PA Students, and Building Adult SCD Clinic Networks.
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View Networking California’s Promo Videos, a part of the Neglected No More Campaign:
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“Sickle Cell Disease has been neglected, it’s suffered tremendously from disparities. California is at the forefront of bringing together people with Sickle Cell Disease, researches, clinicians policymakers, epidemiologists to solve this problem together. Because that's the only way that it's going to be solved.” –Marsha Treadwell, PhD, Regional Director of @ucsfchildrens
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“With the implementation of a comprehensive program I just think these patients (patients with Sickle Cell Disease) are going to have such a different experience, and because of that they’re going to seek care more frequently. And therefore, have longer, healthier lives.” – Stefanie Sacknoff
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"One of the positions that we’re going to start working more closely with is the Community Health Worker. Which, to me, is going to be that integral piece of coming together as a comprehensive program.” - Christine Hoehner-Cooper, RN, MSN, NP-C, UCSF Benioff Children's Hospitals
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The supplemental insurance provider Aflac is expanding its “My Special Aflac Duck” social robot program to benefit children with sickle cell disease. Healthcare professionals and nonprofit organizations can order the life-sized robotic companion for free for children ages 3 and up who have cancer or SCD. The social robot ducks are meant to give comfort and relief to pediatric patients. The ducks can be ordered here.
Read the full press release here
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PSCRC Project ECHO (Extension for Community Healthcare Outcomes) is a telementoring series designed for clinical providers to bridge the gap between a network of local providers and pediatric and adult SCD specialists. Project ECHO calls occur on a monthly basis as a one-hour video conference that includes case presentation, didactic, and review.
The next project ECHO session information is below:
Date: March 16, 2022
Time: 12-1:00PM (PST)
Topic: Got blood?: Causes, effects and solutions to the national blood shortage
Speaker: Trisha Wong, MD
You can register for all upcoming Project ECHO calls and view past recordings directly on the PSCRC website
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SAPPORT is offering two new opportunities for APPs:
- An additional monthly ECHO telementoring series hosted by of Johns Hopkins University, on the 3rd Thursday of each month 9:00AM-10:00AM, PST
- A certificate training program that includes an online curriculum and a 2-4 week observership
To formally enroll to attend the additional monthly ECHO telementoring session for APPs hosted by Johns Hopkins University OR the training program please register/apply here
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Join the Project ECHO virtual seminar on ‘Pediatric to Adult Health Care for People Living with Sickle Cell’ on Monday, March 14,2022 12-1PM (PST). Register by emailing cheri.burge@cuanschutz.edu.
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RESOURCES
(RECORDED WEBINARS)
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Watch the latest webinar in the Sickle Cell Data Collection Series - ‘Addressing School-Related Inequities for Individuals Living with Sickle Cell Disease During the COVID-19 Pandemic and Beyond’ here
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SICKLE CELL EMPLOYMENT OPPORTUNITIES
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Please send any Sickle Cell Disease job openings to Jolene Bastas, MSW, CIBD Administrator, Data and Special Projects at jbastas@c3dibd.org and they will be disseminated to the list serves of both the PSCRC and NCSCC initiatives. You may also request that they are included in this monthly newsletter.
If you know someone interested in working in Sickle Cell Disease, please send their resume to Jolene Bastas (information above) to disseminate it amongst both networks.
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INTERESTED IN SHARING YOUR UPDATES IN THE NEWSLETTER?
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Email Priscilla Salceda at PSalceda@c3dibd.org by Monday, March 28, 2022 to include your information in the next newsletter.
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