Committees & Workgroups
Regional Executive Committee
Mission: Ensure quality care and optimal outcomes for people with bleeding disorders through an integrated and collaborative regional network of providers.
Aim: Guide the region in developing policies, initiating projects, creating materials for families and staff at hemophilia treatment centers (HTCs), mentoring new staff, and monitoring HTCs.
Membership: A group of providers (one representative from each of the 22 Hemophilia Centers), patients and/or caregivers (2-5 representatives), and Regional leadership (Region I & II Administrators).
Committee Members
Biree Andemariam
Connecticut Bleeding Disorders Center
andemariam@uchc.edu
Louise M Baca
Maine Hemophilia & Thrombosis Center
louise.baca@mainehealth.org
Alice Cohen
Newark Beth Israel Medical Center
Alice.Cohen@rwjbh.org
Lisa Cohen
Rutgers Robert Wood Johnson Medical School
cohenlr@rwjms.rutgers.edu
Stacy Croteau
Boston Hemophilia Center
Stacy.Croteau@childrens.harvard.edu
Jennifer Davila
Montefiore Medical Center
JEDAVILA@montefiore.org
Monic Drescher
Dartmouth-Hitchcock Hemophilia Center
Monic.R.Drescher@hitchcock.org
Andrea Dvorak
SUNY Upstate Medical University
DvorakA@upstate.edu
Jennifer Feldman
UMass Memorial Hospital
Jennifer.Feldman@umassmemorial.org
Diana Gilligan
SUNY Upstate Medical University
GilligaD@upstate.edu
Eric Grabowski
Massachusetts General Comprehensive HTC
EGRABOWSKI@mgh.harvard.edu
Gunwant Guron
St. Michael’s Medical Center
GGuron@primehealthcare.com
Katharine E. Halligan
Albany Medical Center
halligk@amc.edu
Chris Holmes
Vermont Regional Hemophilia Center
chris.holmes@med.uvm.edu
Peter Kouides
Mary M. Gooley Hemophilia Center
Peter.Kouides@rochesterregional.org
Catherine McGuinn
The Joan & Sanford I Weill Cornell Medical Cornell
cam9061@med.cornell.edu
Laura McKay
Connecticut Children’s Hemophilia Centers
LMcKay@connecticutchildrens.org
Salley Pels
Rhode Island Hemostasis & Thrombosis Center
SPels@Lifespan.org
Stephanie Prozora
Yale Hemophilia Treatment Center
stephanie.prozora@yale.edu
Beverly Schaefer
Western New York BloodCare
beverly.schaefer@roswellpark.org
Leslie Soto
Puerto Rico Hemophilia Treatment Center
leslie.soto1@upr.edu
Joseph Stanco
Long Island Jewish Medical Center
Jstanco@northwell.edu
Christopher Walsh
Mount Sinai Hemophilia Treatment Center
christopher.walsh@mountsinai.org
Elizabeth Cedeno
NY Downstate Representative
liz_ang@msn.com
Michael Tuberdyck
NY Upstate Representative
mtuberdyck@nvp.net
TBD
New Jersey Representative
Robert Hoyt
New England Representative – CT
rfhoyt58@gmail.com
Kristina Robinson
New England Representative – MA
axelbrobinson@gmail.com
Danelie Rivera
PR/Other
riveradanelie@gmail.com
Nurses & Nurse Practitioner Workgroup
Registered Nurses (RN) perform many functions at the HTC including caring for patients, communicating results, administering medications, and teaching. Most of a patient’s interaction with the HTC will be with nurses with bleeding disorder experience.
Nurse Practitioners (NP) are nurses who have met advanced educational and clinical practice requirements and work in collaboration with the multidisciplinary HTC team. NPs diagnose, treat, evaluate, and manage acute and chronic conditions. This may include obtaining a medical history, ordering and interpreting diagnostic tests, and prescribing medications.
Though the scope of practice differs between an RN and NP, both are vital to patient care at the HTC. In addition, nurses are involved in research projects to enhance patient care.
- Buddy system to pair new nurse with an experienced nurse at another HTC (Piloted it in February 2024 and launching program March 2024).
- NER region won the 2022 NBDF nursing excellence award. Angela Ciraolo and Jessica Wulf (Western New York BloodCare) were the recipients. The project title is “Women with Hemophilia: An exploration of anxiety and depression as experienced during the time of family planning throughout the extended postpartum period.”
- Joseph Stanco (Northwell HTC) was the recipient in 2023 NBDF nursing excellence award . The project title is “Implementing Primary Care Screenings at the HTC”.
- Nursing representatives from Region I and II are on the committee to update NBDF’s “Nurses’ Guide to Bleeding Disorders.”
- Nursing working group to restart the hemostasis certification. A credentialing body was located that uses portfolios to certify. Working group is working on the logistics, funding, etc.
Joseph Stanco
Northwell HTC
jstanco@northwell.edu
NBDF Nursing Working Group Representative
Angela Ciraolo
Western New York Bloodcare
aciraolo@wnybloodcare.org
Region II Representative
Ekaterina Funk
Maine Hemophilia & Thrombosis Center
ekaterina.funk@mainehealth.org
Region I Representative
Social Work Workgroup
As part of the multidisciplinary clinical team, HTC Social Workers help promote wellness by assessing and addressing social, emotional, behavioral, and economic patient/family issues; learning about patient priorities and goals; and identifying barriers to patients obtaining their goals. Issues include mental and emotional health, family dynamics, housing uncertainty, food insecurity, health illiteracy and numeracy, substance use, and other emerging and/or ongoing socio-behavioral-economic matters.
- Working within the team to design and develop Quality Improvement and research projects; submission to IRB as needed, develop questionnaires and research tools, collect and analyze data, and participate in action planning based on data.
- Creating and implementing social work projects that benefit, support, and educate HTC patients and their families. Topics include adolescent transition planning, school advocacy, self-esteem improvement, goal planning for all ages.
- Insurance Advocacy to ensure that patients are educated on what insurances and co-pay assistance programs are available. Helping patients apply to the insurance programs that best suit their needs. Help patients alleviate barriers to obtaining and keeping Insurance. Alert Regional Leadership of barriers posed by insurance policies/procedures that deny, delay, or modify treatment plans. Communicate insurance problems with insurers.
- Connecting patients to local agencies and programs to address emergency situations such as housing, transportation, food vouchers, and utilities payments.
Jackie Bottacariz
Yale HTC
Jacqueline.Bottacari@ynhh.org
Jessica Wulf
WNYBC
jwulf@wnybloodcare.org
Quality Improvement/ Transition Communities of Practice
The purpose of the New England Region Quality Improvement Transition Communities of Practice (CoP) is to provide regional and HTC guidance and input on developing, implementing, and evaluating quality improvement transition projects. Specifically, the CoP will work together on data, measurement, and evaluation related to HRSA specific projects for years 2022-2027 (national QI and transition plan tracking).
Joseph Stanco
Northwell HTC
jstanco@northwell.edu
Kaitlin Barnett, LCSW
New England Regional Administrator
kaitlin.barnett@mountsinai.org
ATHN Data Communities of Practice
Data Managers/Clinical Research Coordinator Community of Practice
Identify and establish best practices in data management to properly implement current and future research projects, quality improvement initiatives, and regional data reports/requirement. Also acts as a network of support or a forum to deliver accurate and consistent data collection tools, as well as ideas to improve the efficiency of day-to-day workflow within the local HTCs.
- Bi-monthly Zoom meetings utilizing the Project ECHO hub and spoke model in disseminating information and best practices from ATHN, CDC, and other partners to local HTC research coordinators/nurses and data managers.
- Provide consistent practices and tools to improve data collection for federal and local research projects and regional progress reports (e.g. CDC Community Counts, Hemophilia-Thrombophilia Data Set, ATHN studies).
Dana Grass
Maine Bleeding Disorders Center (HTC 004)
Dana.Grass@mainehealth.org
Dayna Kennedy, MPH, CCRC
Connecticut Children’s Hemophilia Treatment Centers (HTC 010)
DKennedy@connecticutchildrens.org