Skip to content
NHPCC
  • FIND AN HTC
Search
Close
  • nhpcc@athn.org
Twitter
  • Regional Hemophilia Networks
    • New England States
    • Mid-Atlantic States
    • Southeast States
    • Great Plains States
    • Great Lakes States
    • Northern States
    • Mountain States
    • Western States
  • For Professionals
  • For Consumers
  • Reference Hub
    • Submission
  • About Us
    • Our Impact
Menu
  • Regional Hemophilia Networks
    • New England States
    • Mid-Atlantic States
    • Southeast States
    • Great Plains States
    • Great Lakes States
    • Northern States
    • Mountain States
    • Western States
  • For Professionals
  • For Consumers
  • Reference Hub
    • Submission
  • About Us
    • Our Impact
Popular Search bakergenetictransitiongeneticsspanish
Combined Community Counts and NHPCC Regional Leadership Meetings

Combined Community Counts and NHPCC Regional Leadership Meetings

8
  • Community Counts-NHPCC Leadership Meeting 2-27-2023 Agenda
  • Community Counts-NHPCC Leadership Meeting 2-27-2023 Notes
  • Community Counts-NHPCC Leadership Meeting 2-27-2023 Recording
  • Community Counts-NHPCC Leadership Meeting 2-27-2023 Slides
  • Community Counts-NHPCC Leadership Meeting 3-27-2023 Agenda
  • Community Counts-NHPCC Leadership Meeting 3-27-2023 Notes
  • Community Counts-NHPCC Leadership Meeting 3-27-2023 Recording
  • Community Counts-NHPCC Leadership Meeting 3-27-2023 Slides
Community Counts

Community Counts

1
  • Men with severe hemophilia in the United States: birth cohort analysis of a large national database
For Patients

For Patients

57
  • Children’s Booklet: An Old Dog… A manual for parents and grandparents about the symptoms and treatment of Hemophilia
  • Children’s Booklet: Von Willebrand & Me: A Book for Teen Girls
  • Children’s Hospital Los Angeles – Meet the Team
  • Comprehensive Center for Bleeding Disorders (CCBD) Hereditary Thrombophilia Infosheet
  • Comprehensive Center for Bleeding Disorders (CCBD) Menstruation and Bleeding Disorders Infosheet
  • Comprehensive Center for Bleeding Disorders (CCBD) Platelet Function Defect Infosheet
  • Eddy the Teddy – VUMC Hemlibra Guide Book
  • Eddy the Teddy – VUMC Hemlibra Guide Book
  • General Information and frequently asked questions for patients at Children’s Hospital, Los Angeles
  • Genetics of Hemophilia
  • Heavy/Irregular Menstrual Bleeding – Guide from the University of Miami Hemophilia Treatment Center
  • Hemo-noticias on prophylaxis, Spanish language newsletter for patients
  • Hemo-noticias on transition of care, Spanish language newsletter for patients
  • Hemophilia and Child Development: Preschool
  • Hemophilia and Child Development: School Age
  • Hemophilia and Child Development: Teens
  • Hemophilia Treatment Center (HTC) FAB TOGETHER! Newsletter of the HTC Family Advisory Board at St. Jude Affiliate Clinic at Novant Hemby Children’s Hospital
  • Hemophilia Treatment Centers: Improving Health Outcomes and Reducing Costs
  • Information for Patients and Providers: Musculoskeletal Ultrasound in Bleeding Disorders
  • Information for Patients and Providers: Musculoskeletal Ultrasound in Bleeding Disorders (Spanish)
  • Managing Your Oral Health and Bleeding Disorder (Adult)
  • Managing Your Oral Health and Bleeding Disorder (Adult) – Brochure by the UNC Adams School of Dentistry
  • Managing Your Oral Health and Bleeding Disorder (Pediatric) – Brochure by the UNC Adams School of Dentistry
  • Managing Your Oral Health and Bleeding Disorder (Pediatrics)
  • Mayo Clinic Patient Education: Hemophilia
  • Mayo Clinic Patient Education: Understanding Von Willebrand Disease (VWD)
  • Medications for Heavy Periods (Spanish)
  • Overview of HTC
  • Parenting 101 Keeping Babe Safe: Baby Safety & Developmental milestones – Brochure for patients
  • Patient Safety Initiative: MedicAlert Application Form
  • Rare Bleeding Disorder: Factor VII – Brochure
  • Rare Bleeding Disorder: Factor XI – Brochure
  • Rare Coagulation Factor Deficiencies
  • Recruitment of Staff
  • Sexual Health and Bleeding Disorders – Brochure for patients
  • Sexual Health and Bleeding Disorders – Brochure for patients (Spanish version)
  • Special Coagulation laboratory services
  • Subcutaneous Injection Teaching Tool for Patients and Families
  • Telehealth
  • The Legacy of HTCs: Learn about their history, successes, and new challenges
  • UNC HTC General Patient Pamplet
  • Understanding Your Healthcare Coverage and Benefits
  • Understanding Your Healthcare Coverage and Benefits
  • University of Miami Hemophilia Treatment Center Local & National Resources for Patients
  • University of North Carolina at Chapel Hill HTC – General Patient Pamplet
  • Vanderbilt Hemostasis Treatment Center – Comprehensive Clinic Brochure – Adults
  • Vanderbilt Hemostasis Treatment Center – Comprehensive Clinic Brochure – Pediatric
  • VUMC Clinic Bingo
  • VUMC Comprehensive Clinic Brochure – Adults
  • VUMC Comprehensive Clinic Brochure – Pediatric
  • VUMC Guide to Adult Care
  • What are Platelet Disorders?
  • What is Comprehenisve Care?
  • What is Hemophilia?
  • What is Von Willebrand Disease (Espanol – Que es La Enfermedad de Von Willebrand?)
  • What is Von Willebrand Disease?
  • Women and Girl’s clinic
Healthy People Program

Healthy People Program

3
  • Healthy People 2020 End of Cycle National Report
  • Healthy People 2020 Measures for People with Bleeding Disorders
  • Media Statement: Rare Bleeding Disorders Elevated on the National Health Agenda with Commitment from National Hemophilia Program Coordinating Center and Treatment Centers
HTC

HTC

60
  • 340B Drug Pricing Program
  • 340B Drug Program: Making a Difference in Patients’ Lives – Video (short)
  • 340B Drug Program: Making a Different in Patients’ Lives – Video (long)
  • A Demonstration Project Evaluating a Nurse Practitioner Medically Led Hemophilia Treatment Center in Comparison to a Physican Medically Led Hemophilia Treatment Center
  • A Model for a Regional System of Care to Promote the Health and Well-Being of People with Rare Chronic Genetic Disorders
  • ATHN 1: A Cross-Sectional Analysis of Cardiovascular Disease in the Hemophilia Population – Blood Advances Publication
  • Before and After Genetic Testing
  • Bleeding Disorder Comprehensive Care – NEW STAFF ORIENTATION CHECKLIST
  • Burden of illness: direct and indirect costs amongpersons with hemophilia A in the United States
  • Children’s Hospital Los Angeles – General Information
  • Children’s Hospital Los Angeles – Medications for Heavy Periods (Spanish)
  • Children’s Hospital Los Angeles – Meet the Team
  • Comprehensive Center for Bleeding Disorders (CCBD) RN Orientation Guide
  • Continuous infusion of B domain-truncated recombinant factor VIII, turoctocogalfa, for an acute moderate bleeding episode in hemophilia A: a first case report
  • Creation of a Neonatal Thrombosis Center and its Use to Successfully Treat Infants with Severe Thromboses
  • Creation of a Neonatal Thrombosis Center and its Use to Successfully Treat Infants with Severe Thromboses
  • DDAVP SubQ Instructions
  • Delivery Guidelines for Factor VIII Carriers
  • Delivery Guidelines for Factor VIII Carriers
  • Dentist Information Form
  • Emergency Care of a Patient with Hemophilia
  • Expanding Telemedicine to Medical Homes for Comprehensive Care Delivery for Persons with Hemostatic disorders: A pilot study of the American Thrombosis and Hemostasis Network/National Hemophilia Program Coordinating Center
  • Fluid Restriction
  • Genetic Counseling for the Inherited Bleeding Disorders Community
  • Hemlibra authorization template
  • Hemophilia and Thrombosis Center of Hawaii Discharge Instructions
  • Hemophilia Treatment Centers: Improving Health Outcomes and Reducing Costs
  • Hemophilia: 100 year story
  • HTC Discharge Instructions
  • IHTC Care Matters – Published article
  • Impact of the 340B Pharmacy Program on Services and Supports for Persons Served by Hemophilia Treatment Centers in the United States – published in the Maternal and Child Health Journal
  • Individualized Health Plan
  • Injectable DDAVP- Patient Instruction Sheet
  • Knowledge Assessment and Disease Awareness in Transition Age Hemophilia Patients
  • Lessons Learned from the Development of an Educational Curriculum for Potential and Confirmed Female Carriers of Hemophilia
  • Letter template for inactive HTC Patients
  • Mary M. Gooley Hemophilia Center Pediatric ED Presentation
  • Multidisciplinary Care Coordination Note Template
  • Multidisciplinary Follow Up List for Comp Clinic
  • Needle Phobia: What’s Helpful and What is Not – Tips for smoother, less traumatic infusions
  • New HTC Staff Orientation
  • NHPCC: Access to Care Clinic Outreach – A technical assistance checklist
  • NHPCC: Family Planning for Hemophilia Carriers
  • Orientation for New HTC Staff Guidelines
  • Poster: Continuous infusion of B domain-truncated recombinant factor VIII, turoctocogalfa, for an acute moderate bleeding episode in hemophilia A: a first case report – Presented at NHF BDC 2020
  • Poster: Rituximab Monotherapy is Effective For Inhibitor Eradication with Concomitant Porcine Factor VIII Followed by Emicizumab for Bleed Control in Acquired Hemophilia A – Presented at NHF BDC 2021
  • Poster: The Use of Emicizumab for Acquired Hemophilia A at US Hemophilia Treatment Centers – presented at ISTH 2021
  • Quick Note Template for Essential Care Plan Elements
  • The Use of Emicizumab for Acquired Hemophilia A at US Hemophilia Treatment Centers
  • Thrombophilia Testing: When? Who? Why?
  • Thrombosis and Thrombophilia
  • Travel Letter
  • Umbilical Cord Sampling for Coagulation Testing
  • Umbilical Cord Sampling for Newborn Factor VIII Levels
  • University of Miami Hemophilia Treatment Center Welcome Brochure
  • US Hemophilia Treatment Center population trends 1990-2010: patient diagnoses, demographics, health services utilization
  • VWD Academy for Latin America “Advanced Workshop” Schedule Agenda
  • VWD Academy for Latin America “Basic Workshop” Schedule Agenda
  • WSRHN HTC Comprehensice Clinic Workflow
  • X-File – Newsletter from the University of Miami/Miller School of Medicine Hemophilia Treatment Center
HTC-PTC

HTC-PTC

11
  • Community PT Resource for Providing Care to Individuals with Hemophilia
  • Fall Risk Screen Resource
  • Hemophilia Treatment Center Physical Therapy Collaborative Operational Guidelines
  • HTC PTC Functional Bibliography of Peditaric Milestones
  • Physical Therapist Bleeding Disorder Educational Opportunities and Resources
  • PT Evaluation Resource List
  • PT Exam Decision Pathway for Comprehensive Clinic
  • PT exam UE and LE functional Screen Items
  • PT Phone Triage Template
  • Resources for PT comp clinic efficiency screen exam
  • Work/Employment Questionnaire
Medical Home

Medical Home

1
  • HTC QI Project: Improving Pediatric Comprehensive Care by Bridging the Gap in Services Related to Patient Access to Dental Care and Treatment
Monthly Regional Leadership Meetings

Monthly Regional Leadership Meetings

3
  • Regional Leadership/HRSA Call – 1/17/23 Recording
  • Regional Leadership/HRSA Call – 1/17/23 Notes
  • Regional Leadership/HRSA Call – 1/17/23 Slides
Motivational Interviewing

Motivational Interviewing

1
  • NHPCC: Conducting Quality Improvement Project Using Motivational Interviewing in Patient and Family Engagement
National Collaborative Partnership Meetings

National Collaborative Partnership Meetings

5
  • National Collaborative Partners Meeting Fall 2022 Presentation – Day 1
  • National Collaborative Partners Meeting Fall 2022 Presentation – Day 2
  • National Collaborative Partners Meeting Fall 2022 Report
  • National Collaborative Partnership Meeting Fall 2022 – Day 1 Recording
  • National Collaborative Partnership Meeting Fall 2022 – Day 2 Recording
NHPCC

NHPCC

2
  • NHPCC 2022-2027 Grant Cycle Kickoff Presentation
  • NHPCC Fact Sheet: Hemophilia Treatment Center Services Provided
NHPCC Steering Committee Notes

NHPCC Steering Committee Notes

4
  • NHPCC Steering Committee Meeting Notes – February 2023
  • NHPCC Steering Committee Meeting Notes – March 2023
  • NHPCC Steering Committee Slides – February 2023
  • NHPCC Steering Committee Slides – March 2023
Patient and Family Engagement

Patient and Family Engagement

3
  • Enhancing Communication through Quality Improvement at the Hemophilia Center
  • NHPCC Quality Improvement: Sample Aim Statements for Patient and Family Engagement
  • VUMC Clinic Bingo
Physical Therapy Open Access

Physical Therapy Open Access

7
  • 4 Favorite Core Moves
  • Advanced Yoga Poses
  • Full Body Strengthening
  • How to Use a Cane
  • Low Impact Pool Workout
  • Virtual Learning Posture Tips
  • Yoga Poses for Beginniners
QI Data Workgroup

QI Data Workgroup

4
  • NHPCC QI Data Workgroup Meeting 3-16-2023 Agenda
  • NHPCC QI Data Workgroup Meeting 3-16-2023 Notes
  • NHPCC QI Data Workgroup Meeting 3-16-2023 Recording
  • NHPCC QI Data Workgroup Meeting 3-16-2023 Slides
QI Learning Opportunities Workgroup

QI Learning Opportunities Workgroup

4
  • NHPCC QI Learning Opportunities Workgroup Meeting 3-2-2023 Agenda
  • NHPCC QI Learning Opportunities Workgroup Meeting 3-2-2023 Notes
  • NHPCC QI Learning Opportunities Workgroup Meeting 3-2-2023 Recording
  • NHPCC QI Learning Opportunities Workgroup Meeting 3-2-2023 Slides
QI: General

QI: General

15
  • Increasing Quality Improvement Capability for a Hemophilia Treatment Center: Rady Children’s Hospital San Diego
  • Moving Forward Together
  • National Hemophilia Program Coordinating Center Quality Improvement Initiatives
  • NHPCC QI Checklist
  • NHPCC QI Pilot Coach Engagement Group
  • NHPCC QI Progress Tool
  • NHPCC Quality Improvement Webinar Series: Collecting, Managing, Measuring and Sharing Data
  • NHPCC Quality Improvement Webinar Series: Establishing, Evaluating, and Accomplishing Goals
  • NHPCC Quality Improvement Webinar Series: Maintaining Continuous Quality Improvement Work
  • NHPCC Quality Improvement Webinar Series: QI 101
  • NHPCC Quality Improvement Webinar Series: Read First
  • NHPCC Quality Improvement: the ATHN Coach Perspective
  • Quality Improvement at the HTCs: Successes and Challenges
  • The ATHN/NHPCC Action Guide
  • The ATHN/NHPCC Action Guide for Improving Care for People with Bleeding Disorders
Region 1 and 2 Transition Group

Region 1 and 2 Transition Group

1
  • Region 1 and 2 – Transition Meeting 1 Slides
RHN Open Access

RHN Open Access

13
  • A Model for a Regional System of Care to Promote the Health and Well-Being of People with Rare Chronic Genetic Disorders
  • Capacity Building for Rare Bleeding Disorders in the Remote Commonwealth of the Northern Mariana Islands
  • Capacity Building for Rare Bleeding Disorders in the Remote Commonwealth of the Northern Mariana Islands
  • Economic Burden of Illness among Persons with Hemophilia B from HUGS Vb: Examining the Association of Severity and Treatment Regimens with Costs and Annual Bleed Rates
  • Men with severe hemophilia in the United States: birth cohort analysis of a large national database
  • MSHN QI Efforts
  • Patient satisfaction with US Hemophilia Treatment Center Care, Teams and Services: The First National Survey
  • Patient Satisfaction with US HTC Care, Teams and Services: the first national survey
  • Physical activity and health outcomes in persons with haemophilia B
  • Rituximab Monotherapy is Effective For Inhibitor Eradication with Concomitant Porcine Factor VIII Followed by Emicizumab for Bleed Control in Acquired Hemophilia A
  • Self-Reported Barriers to Hemophilia Care in People with Factor VIII Deficiency
  • US Hemophilia Treatment Center population trends 1990-2010: patient diagnoses, demographics, health services utilization
  • Young adults with hemophilia in the U.S.: demographics, comorbidities, and health status
Transition

Transition

46
  • A Team Quality Improvement Initiative for Improving Transition from Pediatric to Adult Care: Building an Infrastructure
  • Adolescent Transition Quality Improvement Collaborative: The Yale HTC Experience
  • Assessment of Transition Needs for Hemophilia Patients Age 12-18: A Quality Improvement Initiative for Transition from Pediatric to Adult Care
  • Building Transitioning Through Communication: A Unique Experience at Gulf States Hemophilia and Thrombophilia Center
  • CCBD Transition to Adulthood Program: Certificate of Achievement
  • CCBD Transition to Adulthood Program: Transition Completion Form
  • CCBD Transition to Adulthood Program: Transition Tool for Teenager, 13-18 yo
  • CCBD Transition to Adulthood Program: Transition Tool for Young Adult, 19-26 yo
  • CIBD’s Transition Journey: (Don’t Stop Believin’) In Ordering Factor
  • Comprehensive Center for Bleeding Disorders (CCBD) Pediatric Transition Chart Tool
  • Factoring It In: Increasing the Number of Patients Who Order Their Own Factor Between the Ages of 17-22
  • Hemophilia and Thrombosis Center of Nevada – How to use the HTCNV Transitions Assessment Tool
  • Hemophilia and Thrombosis Center of Nevada – Transition Assessment and Education Tool
  • Implementation of a Transition Focused Quality Improvement Program to Increase Self-Advocacy in Patients with Bleeding Disorders
  • Improving Patient Care and Transition Services for Teens and Young Adults
  • Journey to Best Outcomes in Hemophilia Transition: Enhancing Quality on the Pathway to Independence
  • Knowledge Assessment and Disease Awareness in Transition Age Hemophilia Patients
  • Measuring Transition Needs of Pediatric Patients with Bleeding Disorders
  • NHPCC Transition of Care Case Study: Mountain States
  • NHPCC Transition of Care Case Study: Western New York BloodCare
  • Patient Experience of Care (PEC) Survey: Instructions for HTC Providers
  • Patient Experience of Care Survey (English)
  • Patient Experience of Care Survey (Spanish)
  • Patient Experience of Care Survey Project Overview
  • Patient Experience of Care Survey, HTC How to Get started
  • Patient Experience of Care Survey, Patient Instructions (English)
  • Patient Experience of Care Survey, Patient Instructions (Spanish)
  • Pediatric Multidisciplinary Transition Form
  • QI Transition Project Questionnaire
  • QI Transition Project Questionnaire
  • Transition Milestone Matching Game
  • Transition Milestones (ages 12-13)
  • Transition Milestones (ages 12-13)
  • Transition Milestones (ages 14-16)
  • Transition Milestones (ages 14-16)
  • Transition Milestones (ages 17-19)
  • Transition Milestones (ages 17-19)
  • Transition Milestones (ages 20-22)
  • Transition Milestones (ages 20-22)
  • Transition Miletone Matching Game
  • Transition to Adult Care in Hemophilia: Breaking Down Barriers for Patients and Staff
  • Transition to Independence: A Collaborative Team Approach to Improve Care and Self Advocacy
  • Transitioning Patients with Hemophilia from Pediatric to Adult Care: A Quality Improvement Initiative
  • Transitioning Bleeding Disorder Patients from Pediatric to Adult Care: The Kansas City Treatment Center Approach
  • Vanderbilt Hemostasis Treatment Center – Clinic Bingo
  • VUMC Guide to Adult Care
Transition Baseline Assessment Survey 2022

Transition Baseline Assessment Survey 2022

2
  • Frequently Asked Questions: Transition Baseline Assessment Survey 2022
  • How to read your 2022 Transition Baseline Assessment Report

community PT

  • Community PT Resource for Providing Care to Individuals with Hemophilia
National Hemophilia Program Coordinating Center
The NHPCC is funded through the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under the Comprehensive Hemophilia Diagnostic and Treatment Centers’ grant #UC8MC24079. The information and content provided here are those of the NHPCC 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.
ATHN logo

© 2023 ATHN. ATHN is a 501(c)(3) tax exempt organization.
Privacy Statement    Terms of Use    Reference Hub Submission