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JUNE 2019

Who we are:

The Western States Regional Hemophilia Network (WSRHN), also known as Region IX, represents the 13 federally recognized Hemophilia Treatment Centers (HTC) in California, Guam, Hawaii, and Nevada, serving over 10,300 individuals with suspected and diagnosed bleeding and clotting disorders that are genetic, rare and complex. HTCs reduce bleed related deaths,[1] hospitalizations, and costs by 40%[2]. HTCs provide comprehensive diagnostic, treatment, prevention, education, outreach, surveillance, care coordination, cost effective pharmacy services and conduct research.  We belong to a nationwide network of over 140 Centers that serve over 35,000 individuals, using team based integrated care per National Hemophilia Foundation recommendations and guidelines, to fulfill CDC and HRSA goals and objectives.

Why a Newsletter? Our goals is to strengthen communication across our region. And to engage, educate, and link HTCs with stakeholders locally, regionally, and nationally to join us in improving the health of inherited blood disorders community.

Interested in sharing your updates in our newsletter? Email Shalini Vora at
svora@c3dibd.org or Tran Le at tle@c3dibd.org
 
[1] Soucie et al Blood 2000
[2] Soucie et al Haemophilia 2001
In this newsletter, we are including: 
  • National News
  • Regional Updates
  • Upcoming webinars & events
  • Clinical Trials
  • HTC Staff Updates
National News
New! CDC Unveils New Tool to Visually Represent and Share Community Counts Data.  CDC is excited to announce the launch of its Community Counts data visualization tool. By using elements like charts, graphs, and maps, data visualization tools provide an accessible way to see and understand trends, outliers, and patterns in data and information by turning large and small datasets into visuals that are easier to understand and process.  Here’s an FAQ.
New! Better You Know is a public health campaign developed by the National Hemophilia Foundation (NHF) in partnership with the CDC. The campaign aims to raise awareness about bleeding disorders among individuals who may experience symptoms but have not yet been diagnosed. At the Better You Know campaign webpage, men and women can take a free, web-based risk assessment. If they are at risk, tools and resources are available to help them take steps toward obtaining an accurate diagnosis and treatment plan, if needed, from their healthcare provider.
Regional Updates
New! Children’s Hospital Los Angeles’s HTC will be participating in the Twinning Program of the World Federation of Hemophilia (WFH) with the HTC in Montevideo, Uruguay. The program aim is to improve hemophilia care in emerging countries through a formal, two-way partnership between HTCs. Dr. Guy Young, Sandra Valdovinos-Heredia, MSW, ACSW (Social Work), Erin Cooper, BSN (RN and Nurse Care Manager), and Kerri Narasaki, PT (Physical Therapist) will provide education and resources to the Uruguay team to strengthening comprehensive patient care. For more information, contact Sandra Valdovinos-Heredia at svheredia@chla.usc.edu.

New! Open clinical trials at Children’s Hospital Los Angeles:
  • Long-acting factor replacement therapy for PUPs
  • Subcutaneous treatment for hemophilia A/B patients with inhibitors
  • Understanding the impact of hemophilia on patient’s neurocognitive development
  • Gene therapy for severe or moderately severe hemophilia B patients
  • TEG technology to learn more about effects of bypassing agents with Hemlibra
  • Observing patients undergoing minor surgical procedures while on Hemlibra
  • Comparing factor levels between one step clotting and chromogenic assay
  • Understanding impact and treatment of females with bleeding disorders
  • Oral anticoagulation for thrombosis and duration of therapy
For more information, please contact coagresearch@chla.usc.edu.
 
New! Hemophilia Foundation of Northern California (HFNC) has appointed Alona Metz as the new Executive Director. Alona comes to HFNC with deep roots in the community and a compelling desire to work with the Foundation. She will spend the first few months learning HFNC office processes and procedures, understanding programs and projects and familiarizing herself with the roles of many stakeholders. If one would like to schedule a lunch meeting, please email Ashley Gregory at thefemalefactor@hemofoundation.org.
New! The Hemostasis and Thrombosis Center of Nevada (HTCNV) has been busy with outreach clinics throughout Nevada, and advocating for access to care in Carson City. Research is continuing with ATHN 5, 6, and 7. HTCNV also continues to participate in Bioverativ and Novo Nordisk studies. For more information, please contact Becki Berkowitz, RN at becki.berkowitz@htcnv.org.
New! OUR HTC NETWORK IS GROWING! Here’s a list of HTC staff that have started since March 2019:
  • Erin Cooper, Nurse Care Manager, Children’s Hospital Los Angeles
A Special Congratulations to the following HTC staff:
  • Amber Federizo, APRN, FNP-BC, from Hemostasis and Thrombosis Center of Nevada graduated with her DNP from University of Nevada on May 16, 2019.
  • Lisa Ferrer, RN, is retiring after 14 years as the Adult Hemophilia Nurse Coordinator and after working at Lucile Packard Children's Hospital Stanford for over 30 years. The hospital, HTC, and region appreciate all Lisa has done for so many years and especially for her dedication and excellent care she has given to patients in the Adult Hemophilia Program.
RECENT EVENTS
New! Guam Comprehensive Hemophilia Care Program (GCHCP) celebrated their 20th anniversary at the Guam Hemophilia Medical Symposium and Patient/Family Camp, March 29 – 31, 2019. The symposium was well attended by 80 clinicians: leaders from Children with Special Health Care Needs (CSHCN) and Maternal and Child Health (MCH); doctors; dentists; registered nurses; physical therapists; and clinic and school registered nurses. Forty patients and family members attended the camp. Judith Baker, DrPH, MHSA, Public Health Director, Western States/Region IX, and Becki Berkowitz, RN, Hemostasis & Thrombosis Center of Nevada, who helped found GCHCP presented and celebrated. Presenting also were Doris Quon, MD, PhD and Cindy Bailey, DPT from Orthopaedic Hospital Los Angeles HTC and Adam Giermasz, MD from the UC Davis HTC.
Becki Berkowitz, RN, gave a Bleeding Disorders 101: The Basics, What You Need to Know presentation to a group of 25 doctors, registered nurses, and social workers in Guam’s Public Health Clinic.
UPCOMING WEBINARS & EVENTS
New! The 2nd Annual Dr. Charles Drew Blood Drive will be on June 1, 2019, at 9:00 am – 2:00 pm at the Pearson Community Center, 1625 West Carey Ave, North Las Vegas, NV 89032. Donors can start the donation process by completing an online pre-donation health history questionnaire, on the day of the donation, go to www.redcressblood.org/RapidPass. Please call 866-236-3276 with questions about eligibility to donate blood.
New! On June 4, 2019, at 12:00 - 12:30 pm, the Hemophilia Council of California is hosting a webinar entitled “Navigating Your GHPP Care: What You Need to Know to Prepare for the Future.” This 20-minute webinar will focus on navigating the GHPP system as well as changes and tips to know t to get the most out of one’s care.  Session’s speakers, Willie Anderson and Barbara Sasaki, will cover eligibility, interaction with other insurance, interaction with Medi-Cal, utilizing care, and patient and provider responsibilities. To sign up, click here.
New! Hemophilia Foundation of Southern California (HFSC) is hosting the “ROAR” weekend retreat on June 7-9, 2019, for those with bleeding disorders and immediate family members or caregivers living in the same household. Activities including tomahawk throwing, archery, swimming, karaoke, campfire, late night forest hike and ropes course. This year, there will also be a Young Adult Singles Program (ages 18-35). $20/person, free for kids under 3, financial waivers are available. To register, go to: https://www.eventbrite.com/e/hfsc-retreat-roar-tickets-58503589812

New! The Third Annual Familia de Sangre, a three-day conference on blood disorders for patients a nd families, presented in Spanish, will be held on September 6-8, 2019 in Anaheim, CA. The conference will consist of educational sessions; opportunities to network; discussion of important healthcare issues, education and health support services. It is organized by the Hemophilia Foundations of Central, Northern and Southern California and the Hemophilia Association of San Diego County. The space is limited. To register, go to: https://www.familiadesangre.org/. If patients are interested in attending and live in another state, contact cynthia@hemosocal.org.

New! Registration is now open for Camp Blood Brothers and Sisters, July 23-28, 2019 at the Painted Turtle in Lake Hughes, CA. This is for campers ages 7-16 with diagnosed genetic bleeding disorders. Siblings may apply, but priority is given to affected individuals. First come, first served. Please start the application now: http://thepaintedturtle.org/campers-families/families/application/. For help with your application (English or Spanish), please contact cynthia@hemosocal.org or call 626-765-6656.

New! NHF’s 71st Bleeding Disorders Conference will be held October 3-5, 2019 in Anaheim, California. The three-day conference will be filled with educational sessions, networking opportunities and access to the Exhibit Hall. Registration include entrance to Opening Session, Awards Luncheon, and exciting Final Night event. Kids Program is available for children under 12 years old. To register, go to: https://events.hemophilia.org/ehome/index.php?eventid=385113&
New! Musculoskeletal Ultrasound Training for Hemophilia and Other Arthritic Conditions, presented by UC San Diego School of Medicine, is a 3-day hands-on course developed to provide training in musculoskeletal ultrasound (MSKUS) for evaluation of hemophilic joint disease, but also other arthritic conditions and musculoskeletal abnormalities and syndromes. The main objective of the course is to enable physicians and other care providers to use MSKUS as a point-of-care imaging tool to assist with the diagnosis and treatment of joint pains. The course has specific elements geared towards hemophilic joint disease to recognize joint bleeding, synovial hypertrophy and synovitis, cartilage degradation, osteochondral lesions and other structural joint abnormalities. The course also includes a teaching module pertaining to the Joint Tissue Activity and Damage Exam (JADE), a validated ultrasound imaging protocol for hemophilic joints. Upcoming dates: August 21-23, 2019; November 6-8, 2019; January 29-31, 2020; and April 1-3, 2020. Contact Marlene Zepeda at mxzepeda@ucsd.edu or (858) 249-0341.
We encourage all of our HTCs to share news and updates with the network through this quarterly newsletter. Please send images you may want displayed in conjunction with a brief blurb of your organization's/disicplines's updates to Shalini Vora at svora@c3dibd.org, or Tran Le at tle@c3dibd.org. The next set of deadlines would be: September 16, 2019; and November 18, 2019. 

Editors: Judith Baker, DrPH, MHSA; Shalini Vora, MPH; Tran Le
Copyright © 2019 WSRHN, All rights reserved.
Western States Regional Hemophilia Network

This project is/was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number H30MC24045 entitled “Western States Hemophilia Treatment Centers” in the amount of $500,000.  This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

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Center For Inherited Blood Disorders · 2670 N Main St Ste 100 · Santa Ana, CA 92705-6639 · USA

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