October 2021 
The Pacific Sickle Cell Regional Collaborative and Networking California for Sickle Cell Care seeks to improve the health and quality of life of individuals with sickle cell disease.
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. 
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.  
In this Edition of the Sickle Cell Connections Newsletter, Learn About:
  • PSCRC & NCSCC Regional Updates
  • Clinical Education
  • Reports
  • Advocacy
  • Grant Opportunities
  • Resources
  • Regional Team Member Spotlights
  • Sickle Cell Employment Opportunities
New!  UC San Diego (UCSD) Health Updates: 
  • Their team has two presentations at American Society of Hematology (ASH) Annual Meeting 2021 
    • Team's abstract titled "The Impact of Same Day Infusion Treatment Protocols for Uncomplicated Vaso-Occlusive Crises within an Embedded Sickle Cell Care Model" was accepted for presentation as a poster (Stefanie Sacknoff, PA will be presenting) 

    • Dr. Gopal's application titled "Establishing same day infusion treatment protocols for uncomplicated sickle cell vaso-occlusive crises utilizing a telemedicine platform" was selected for presentation at the ASH Choosing Wisely Campaign presentation 

  • Held their first team building activity in honor of sickle cell awareness month 

  • Started a series of education modules for the infusion nurses focused on day infusion protocols 

  • Piloted a collaboration with the emergency department (ED) physicians to develop individualized pain management plans for patients presenting with crises to the ED 

  • A Medical Director position at UCSD Health was created for the sickle cell program and was filled by Srila Gopal, MD. Dr. Gopal is a board-certified hematologist who specializes in treating patients with blood disorders. As the lead of UCSD’s sickle cell center, she aims to expand clinical and translational research in sickle cell disease at the institution and also address implicit and explicit provider bias that negatively impacts patient care. Dr. Gopal is the principal investigator at UCSD Health for the PSCRC and NCSCC initiatives and aims to build a comprehensive and sustainable adult sickle cell center at UCSD to serve the greater San Diego area and neighboring counties. 

New! 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 PSCRC Project ECHO Telementoring session: 
Date & Time: November 4, 2021; 12:00-1:00PM (PST) 
Topic: Sickle Cell Disease & Pregnancy 
Presented by: Esteban Gomez, MD- Center for Inherited Blood Disorders 

You can register for all upcoming Project ECHO calls and view past recordings directly on the PSCRC website 

New!  The UCSF Benioff Children’s Hospital Oakland will be hosting a Sickle Cell Disease Boot Camp in the fall for physicians and advanced practice providers. At this time, the boot-camp date and time is to be determined.  

Please email Beth Anne Martin at to be added to the waitlist.

New! The Sickle Cell Community Consortium’s inaugural Caregiver Summit will be held virtually Nov. 12–14, 2021. The event is being hosted in partnership with Cleverly Changing, the Parent 2 Parent initiative, and members of the sickle cell disease (SCD) community nationwide. Topics will include mental health and self-care, disease education and management, medical resources and care access, and SCD research and treatments. 

Supporters and healthcare and industry professionals are also invited to register for the Caregiver Summit. 

To learn more, click here  

New! 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 


New! NICHQ's Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program Highlights Need for Improved Sickle Cell Disease Care. Through NICHQ's 2017-2021 Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program (SCDTDRCP), they worked with five regional teams from across the country to improve coordination and service delivery for children and adults living with sickle cell disease, enhance access to services, and improve and expand patient and provider education. Upon completion of the project, NICHQ delivered a comprehensive report to Congress detailing the program outcomes and findings. 

Read the Impact Statement for project highlights from the 2017-2021 SCDTDRCP Report to Congress.  

Access the full Report to Congress, including the Model Protocol and Compendium of Tools and Resources. 


New! Members of the U.S. Senate, including those from the Sickle Cell Data Collection (SCDC) states, provided signed support for implementing the Sickle Cell Research, Surveillance, Prevention, and Treatment Act. The legislation requested $25 million for the SCDC program in the FY2022 federal budget.  

To learn more about the SCDC, click here 


New! Seeking to improve the health and life quality of underserved sickle cell disease communities internationally, Global Blood Therapeutics (GBT) has established The GBT Foundation.  

The GBT Foundation will fund programs from nonprofit organizations and is currently accepting grant proposals in four core areas of focus: 

  • Increasing SCD education and awareness for communities impacted by SCD to build knowledge of the devastating physical, social, mental and societal effects of this genetic blood disorder. 

  • Empowering people with SCD, caregivers and others in the SCD community to help improve the lives and care of the community. 

  • Improving access to healthcare in SCD to help those living with SCD receive the high-quality health services they need and deserve. 

  • Enhancing health equity through innovative and sustainable solutions that help vulnerable communities have the chance to reach their full health potential without social obstacles. 

To read the full press release, click here 

New! Health Equity Resources:

New! Sickle Cell Data Collection (SCDC) Resources:  


Starting November 2021, we will be highlighting a member from the NCSCC or the PSCRC in this monthly newsletter. We will ask the same questions of each highlighted member and ask for a photo to include in the newsletter. This will allow members to get to know one another more on a professional and personal level by sharing why you do this work, what changes you want to see in the provision of Sickle Cell care, and some fun facts about yourself. When you are selected, you will receive an email from Jolene Bastas from CIBD, so be on the lookout in the coming months. 


New Job Listing! UCSF Benioff Children's Hospital Oakland is hiring for the position: NCSCC Health Care Strategist. View full job listing here

Please send any Sickle Cell Disease job openings to Jolene Bastas, MSW, CIBD Project Management Consultant at and they will be disseminated to the listserves 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.  

Email Priscilla Salceda at by Monday, November 22, 2021 to include your information in the next newsletter.
Copyright © 2021 PSCRC, All rights reserved.
 Pacific Sickle Cell Regional Collaborative

This newsletter is partially supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under U1EMC27862 Sickle Cell Treatment Demonstration Program as part of an award totaling $900,000. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U.S. Government.

Copyright © 2021 NCSCC, All rights reserved.

Networking California for Sickle Cell Care

This project is supported by the California Department of Public Health (CDPH) as part of SB-74 and the Budget Act of 2019. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by the State of California.

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