Hemophilia Alliance

🟦 Non-Member Event : THSNA 2024 Thrombosis & Hemostasis Summit of North America
2024-04-03 - 2024-04-06
Date: April 3rd (Pre-Summit Workshops)
Date: April 4th – 6th (Chicago, IL & Virtual)
Click here for info.

🟥 Member Event : 2024 New HTC Staff Orientation
2024-03-25 - 2024-03-27
Date: March 25 – 27
Location: TBD
PLEASE NOTE REGISTRATION FOR THIS MEETING WILL CLOSE ON FEBRUARY 9, 2024.

Please contact Theresa Parker with any questions regarding this registration at theresa@hemoalliance.org or 727-688-2568.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Pfizer - Exploring the Science and Possibilities of Gene Therapy in Hemophilia
2024-03-14 13:00 - 14:00 (America/New_York)
Date: Thursday, March 14, 2024
Time: 1:00pm – 2:00pm ET

TITLE:
Exploring the Science and Possibilities of Gene Therapy in Hemophilia
WEBINAR OVERVIEW:
By attending this webinar, you will discover the scientific approach of gene therapy, understand gene therapy objectives for patients with hemophilia, and explore the shared decision-making process to accompany your patients in their decision journey.
SPEAKER:

Nathan T. Connell, MD, MPH,
Boston Hemophilia Center
Brigham and Women’s Hospital and Harvard Medical School
Dr. Nathan Connell is Chief of Medicine at Brigham and Women’s Faulkner Hospital, Vice Chair of Medicine at Brigham and Women’s Hospital, Associate Director of the Boston Hemophilia Center, and Associate Professor of Medicine at Harvard Medical School. In addition to his work defining the field of systems-based hematology, he co-chaired the ASH ISTH NHF WFH Guidelines on the Diagnosis and Management of von Willebrand disease.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from BD SUMHAC - Advocating for Access to Behavioral Health Treatment for the Bleeding Disorders Community
2024-03-05 13:00 - 14:00
Date: Tuesday, March 5, 2024
Time: 1:00pm – 2:00pm ET

TITLE:
Advocating for Access to Behavioral Health Treatment for the Bleeding Disorders Community
WEBINAR OBJECTIVE:
This presentation will educate HTC providers about the barriers to access to inpatient and residential mental health and substance use treatment facilities for people with bleeding disorders. It will provide tools that HTC providers can use to facilitate access to behavioral health treatment for their patients and resources for responding to denials. Finally, it will briefly introduce the federal and state advocacy work of the Bleeding Disorders Substance Use and Mental Health Access Coalition, and share opportunities for provider involvement.
SPEAKERS:

Kate Bazinsky, MPH – Chair, Bleeding Disorders Substance Use and Mental Health Access Coalition
Emily Wheat, PhD – Psychologist, University of Colorado Hemophilia Treatment Center
Jen Feldman, RN, MSN – Nurse Coordinator, University of Massachusetts Memorial Hemophilia Treatment Center
Lucy Ramirez, LCSW – Social Worker, Rush University Medical Center Hemophilia Treatment Center

🟥 Member Event : 2024 Linda Gammage Social Worker Conference
2024-02-28 - 2024-03-01 | Renaissance New Orleans Arts Warehouse District Hotel, 700 Tchoupitoulas Street, New Orleans, LA, 70130, United States
Date: Febuary 28 – March 1
Location: New Orleans, LA

Please contact Jeff Amond with any questions regarding this registration at amond@hemoalliance.org or 608-206-3132.

🟥 Member Event : 2024 Pharmacist CE Conference
2024-01-24 - 2024-01-26 | The Limited Hotel, 425 Meeting Street, Charleston, SC, 29403, United States
Date: January 24 – 26
Location: Charleston, South Carolina

Please contact Theresa Parker with any questions regarding this registration at theresa@hemoalliance.org or 727-688-2568.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Takeda - Real-world Characterization of Female Hemophilia A Carriers in the US
2024-01-23 13:00 - 14:00
Date: Tuesday, January 23, 2024
Time: 1:00pm – 2:00pm ET

TITLE:
Real-world Characterization of Female Hemophilia A Carriers in the US
OBJECTIVE:
Summarize recently published real-world data on Female Hemophilia A Carriers in the US, including clinical and healthcare resource utilization information.
TARGET AUDIENCE:
Hematologists, NPs, nurses, pharmacists
SPEAKER:

Jorge Caicedo, MD, Sr. Medical Director, Takeda

🟥 Member Event : 2024 Hemophilia Alliance Board Retreat
2024-01-07 - 2024-01-09
Date: January 7 – 9
Location: Dallas, TX

🟦 Non-Member Event : ASH Annual Meeting
2023-12-09 - 2023-12-12
Date: December 9th – 12th (San Diego, CA & Virtual)
Click here for info.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Takeda - Overview of Adzynma (rADAMTS13) Prescribing Information
2023-11-29 13:00 - 14:00
Date: Wednesday, November 29, 2023
Time: 1:00pm – 2:00pm ET

TITLE:
Overview of Adzynma (rADAMTS13) Prescribing Information
OBJECTIVE:
Inform on the new approval and prescribing information of Adzynma indicated for prophylactic and on-demand use for patients with congenital TTP.
TARGET AUDIENCE:
Hematologists, NPs, nurses, pharmacists
SPEAKER:

Ali Mokdad, MD, PhD, MBA, Medical Director, Takeda

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from HEMA Biologics - A different treatment option for Inhibitor patients
2023-11-27 13:00 - 14:00
Date: Monday, November 27, 2023
Time: 1:00pm – 2:00pm ET

TITLE:
A different treatment option for Inhibitor patients
OBJECTIVE:
This presentation will provide an overview of inhibitors and explore the efficacy, safety, tolerability, clinical development, and reasons to consider a different treatment option.
TARGET AUDIENCE:
All HTC Staff
SPEAKER:

Guy Young, MD.
Director, Hemostasis and Thrombosis Center
Director, Clinical Coagulation Laboratory Cancer and Blood Disorders Institute Children’s Hospital Los Angeles
Professor of Pediatrics, University of Southern California Keck School of Medicine

🟥 Member Webinar : Hemophilia Alliance Hosts - An Informational Session from Bayer - Clinical review of the Jivi® PROTECT VIII Trial and insights from HEM-POWR: A Real-World Evidence (RWE) Study of Jivi®
2023-11-17 13:00 - 14:00
Date: Friday, November 17, 2023
Time: 1:00pm – 2:00pm ET

TOPIC:
Clinical review of the Jivi® PROTECT VIII Trial and insights from HEM-POWR: A Real-World Evidence (RWE) Study of Jivi®
OVERVIEW:
This session includes key information about Jivi including, safety and efficacy data from the clinical trials, step-wise dosing and Jivi RWE Data from HEM-POWR, a multinational,open-label, prospective, non-interventional, multicenter cohort study of Jivi®.
There will also be a review of the Q4 2023 340B pricing for the Bayer Hemophilia A portfolio under the Hemophilia Alliance Contract.
TARGET AUDIENCE:
All HTC Staff
SPEAKER:

Mark T. Reding, MD.
Director, Center for Bleeding and Clotting Disorders
Professor of Medicine, Division of Hematology, Oncology, and Transplantation
University of Minnesota

For additional important risk and use information, please see the full Prescribing Information for Jivi.
You are encouraged to report negative side effects or quality complaints of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar on Hemgenix Real World Learnings from CSL Behring
2023-11-13 13:00 - 14:00
Date: Monday, November 13, 2023
Time: 1:00pm – 2:00pm ET

TITLE:
Hemgenix Real World Learnings
SPEAKER:

Vidhi Desai, MD
Senior Medical Director, Coagulation
North America Medical Affairs
Vidhi Desai joined CSL Behring in 2018 as Therapeutic Area Head, Director Medical Affairs for Coagulation Products in North America, providing strategic and tactical medical leadership for Idelvion®, Afstyla® and Humate-P®, contributing to key operational and cross-functional projects as a member of the Medical Affairs leadership team.
Prior to joining CSL Behring, Vidhi worked as an attending hematologist at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, focusing primarily on benign hematologic disorders.
Vidhi earned her Doctor of Medicine at New York Medical College and completed her internal medicine and hematology/oncology training at Rutgers Robert Wood Johnson Medical School in New Brunswick, NJ.

🟥 Member Event : Physicians & Business Administrators Meeting
2023-11-10 - 2023-11-12 | The Portofino Hotel & Marina, Redondo Beach, 260 Portofino Way, Redondo Beach, CA, 90277, United States
Location: Redondo Beach, California
Venue: The Portofino Hotel & Marina

Please contact Theresa Parker with any questions regarding this registration at theresa@hemoalliance.org or 727.688.2568.

DRAFT AGENDA
Friday: 8 am to 5 pm
For Business Administrators

Alliance Services – an overview of what is offered by Hemophilia Alliance
340B Refresher – Basic overview with answers to targeted questions
Understanding Medicaid & Medicare – A look at the public payers and changes
HANS – Why it’s important to have payer contracts
Why we need National Patient Org
Advocacy – Threats and Opportunities for HTCs
Understanding GPO contracts
Running an HTC pharmacy – Having a Strategic Plan
Legal Discussion – Understanding the challenges

6 pm – Dinner
Saturday: 8 am to 12:30 pm
Business Course
Sunday: 8 am to 12:30 pm
For Clinical Providers

Strengths: Leadership – How to work within an HTC
Weakness: Relationships – How to work within a larger institute
Opportunities: Risk – Going Independent
Threats: Planning – Strategic Plan

🟥 Member Webinar : Hemophilia Alliance Hosts - A Discussion from Genentech About Subcutaneous Prophylaxis Treatment for Hemophilia A
2023-11-09 13:00 - 14:00
Date: Thursday, November 9, 2023
Time: 1:00pm – 2:00pm ET

TITLE:
Learn More About Subcutaneous Prophylaxis Treatment for Hemophilia A: A Discussion on the Latest Data and Patient Management
DESCRIPTION:
Please join us for an engaging webinar led by Ketna Mistry, MD who will be sharing information on patients with hemophilia A with a subcutaneous prophylaxis including the latest clinical data. Ther presentation will include pivotal efficacy and safety data, joint health data, data in infants, and an overview of real-world experience. Be sure to bring your questions to have them answered during the Q&A following the program!
SPEAKER:

Ketna Mistry, MD
Medical Director, Hematology & Rare Blood Disorders, U.S. Medical Affairs; Genentech
Dr. Mistry has 25 years of experience in her medical career, as a physician caring for patients and teacher at Emory University, a researcher at CDC, and currently as a medical director at Genentech. She completed medical school at Tulane University and graduated with honors from UCLA for her bachelor’s degree in psychobiology. She completed her internship and residency in pediatrics at University of Texas in Houston. She is passionate about teaching and sharing information so that patients and providers can make the best informed decision for their care.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar from Pfizer - Case Studies of Using BeneFix® (Coagulation Factor IX [Recombinant]) in Different Hemophilia B Patient Populations in an Evolving Treatment Landscape – Is There More to the Story?
2023-11-07 14:00 - 15:00
Date: Tuesday, November 7, 2023
Time: 2:00pm – 3:00pm ET

TITLE:
Case Studies of Using BeneFix® (Coagulation Factor IX [Recombinant]) in Different Hemophilia B Patient Populations in an Evolving Treatment Landscape – Is There More to the Story?
SPEAKER:

Doris Quon, MD
Medical Director of the Orthopaedic Hemophilia Treatment Center at the Luskin Orthopaedic Institute for Children in Los Angeles, California

🟥 Member Webinar : Hemophilia Alliance Hosts - A Clinical Overview and Update from Sanofi for Efanesoctocog Alfa, A High Sustained Factor VIII Therapy
2023-10-24 14:00 - 15:00
Date: Tuesday, October 24, 2023
Time: 2:00pm – 3:00pm ET

TITLE:
A Clinical Overview and Update from Sanofi for Efanesoctocog Alfa, A High Sustained Factor VIII Therapy
OBJECTIVES:

Highlighting both Efanesoctocog Alfa’s pediatric study, the XTEND-Kids data that were presented at ISTH 2023, as well as an observational study of patients who switched from current therapy to Efanesoctocog Alfa prophylaxis.
Highlighting available lab monitoring program available to your centers.

TARGET AUDIENCE:
All HTC Staff
SPEAKER:

Nancy Epp, PharmD, BCACP
Nancy Epp is a Senior Medical Science Liaison with Sanofi. She supports the Sanofi hemophilia A and B portfolio to provide up-to-date scientific data to healthcare providers. Nancy is based in Houston, Texas, and can be reached by email at Nancy.Epp@sanofi.com.

🟦 Non-Member Event : ATHN Data Summit
2023-10-18 - 2023-10-20
Date: October 18th – 20th (Atlanta, GA)
Click here for info.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Clinical Overview from Novo Nordisk - A Label Update on Rebinyn, (Coagulation Factor IX (Recombinant), GlycoPEGylated: FDA Approval for a Prophylaxis Indication for Persons with Hemophilia B
2023-10-12 13:00 - 14:00
Date: Thursday, October 12, 2023
Time: 1:00pm – 2:00pm ET

TITLE:
A Label Update on Rebinyn, (Coagulation Factor IX (Recombinant), GlycoPEGylated: FDA Approval for a Prophylaxis Indication for Persons with Hemophilia B
OBJECTIVE:
Provide a clinical review of Rebinyn that supports prophylaxis, on-demand and perioperative indication in adults and children
TARGET AUDIENCE:
All HTC Staff
SPEAKER:

Parin Chikani, PharmD, MBA
Medical Account Director, Novo Nordisk Inc
Parin Chikani, lives in the Chicagoland area and earned his Doctorate of Pharmacy degree from the University of Illinois at Chicago, College of Pharmacy and his MBA from Kellstadt Graduate School of Business. Before joining Novo Nordisk, Parin had been in the Pharmacy/Managed Care setting for over 15 years where he held many different roles and leadership positions within Pharmacy and Medical areas of the business. At Novo Nordisk, one of his roles and responsibilities is to ensure payors and clinicians are up-to-date on evidence based clinical and scientific information in the areas of Rare Diseases to help assist them with patient care.

🟥 Member Event : Fall Members Meeting
2023-10-08 - 2023-10-10 | The St. Anthony Hotel, San Antonio, 300 East Travis Street, San Antonio, TX, 78205, United States
Venue: The St. Anthony Hotel
Location: San Antonio, Texas

Please contact Theresa Parker with any questions regarding this registration at theresa@hemoalliance.org or 727-688-2568.

DRAFT AGENDA:

Oct. 8th – Welcome Reception @ 6pm
Oct. 9th – Breakfast @ 7:30am; Meeeting: 8:30am – 5:00pm; Group Dinner @ 6:30 pm
Oct. 10th – Breakfast @ 7:30am; Meeeting: 8:30am – 3:30pm

🟥 Member Webinar : Hemophilia Alliance Hosts - A Clinical Overview from Novo Nordisk - An injectable, extended half-life recombinant, glycopegylated factor VIII concentrate for Hemophilia A
2023-10-04 13:00 - 14:00
Date: Wednesday, October 4, 2023
Time: 1:00pm – 2:00pm ET

TITLE:
An injectable, extended half-life recombinant, glycopegylated factor VIII concentrate for Hemophilia A
OBJECTIVE:
Provide a clinical overview of Esperoct that supports prophylactic, on-demand and perioperative management indications in adults and children.
TARGET AUDIENCE:
All HTC Staff
SPEAKER:

Parin Chikani, PharmD, MBA
Medical Account Director, Novo Nordisk Inc
Parin Chikani, lives in the Chicagoland area and earned his Doctorate of Pharmacy degree from the University of Illinois at Chicago, College of Pharmacy and his MBA from Kellstadt Graduate School of Business. Before joining Novo Nordisk, Parin had been in the Pharmacy/Managed Care setting for over 15 years where he held many different roles and leadership positions within Pharmacy and Medical areas of the business. At Novo Nordisk, one of his roles and responsibilities is to ensure payors and clinicians are up-to-date on evidence based clinical and scientific information in the areas of Rare Diseases to help assist them with patient care.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Case Discussion from Takeda on Adult Severe Type 3 von Willebrand Disease Patient
2023-09-20 13:00 - 14:00
Date: Wednesday, September 20, 2023
Time: 1:00pm – 2:00pm ET

TITLE:
Case Discussion: Adult Severe Type 3 von Willebrand Disease Patient
OBJECTIVE:
In case you missed it at the National Bleeding Disorders Foundation conference, join expert Dr. Jonathan Roberts, MD for an interactive discussion about managing patients who are living with von Willebrand Disease (VWD). Dr. Roberts will guide you through a VWD case-based experience, including reviewing treatment history and a treatment option for prophylaxis.
TARGET AUDIENCE:
Hematologists, nurses, pharmacists, and other stakeholders with medical credentials
SPEAKER:

Dr. Jonathan C. Roberts, MD
Dr. Roberts is the Associate Medical Director/Associate Research Director of Bleeding and Clotting Disorders Institute in Peoria IL. Dr. Roberts is also an Associate Professor of Pediatrics and Medicine at the University of Illinois College of Medicine.
His research areas of interest are in advancing novel laboratory assay development to improve the diagnosis of von Willebrand Disease (VWD) and enhancing individualized clinical management of hemophilia, VWD, and other rare bleeding and classical hematologic disorders.

🟦 Non-Member Event : 2023 Partners Physician Academy
2023-09-18 - 2023-09-22
Date: September 18th – 22nd
Click here for info.

🟥 Member Webinar : Hemophilia Alliance Hosts - Simplifi 797 for Hemophilia Alliance member HTC pharmacies
2023-08-22 14:00 - 15:00
Date: Tuesday, August 22, 2023
Time: 2:00pm – 3:00pm ET

The webinar will review how to stay compliant with USP 797

SOP’s
Training
Competencies
Task Management
Reporting
Alerting
Elimination of Blind Spots

Please contact Mark Plencner at mark@hemoalliance.org with questions.

🟦 Non-Member Event : NHF BDC 2023
2023-08-17 - 2023-08-19
Date: August 17th – 19th (National Harbor, MD)
Click here for info.

🟥 Member Webinar : Hemophilia Alliance Hosts - HTC Preparation for ROCTAVIAN™ (valoctocogene roxaparvovec-rvox) from BioMarin
2023-08-08 13:00 - 14:00
Date: Tuesday, August 8, 2023
Time: 1:00pm – 2:00pm ET

TITLE:
HTC preparation for ROCTAVIAN ™ (valoctocogene roxaparvovec-rvox)
OBJECTIVE:
Learn about eligibility testing, ordering, storing, handling and administering ROCTAVIAN
TARGET AUDIENCE:
HTC staff interested in learning about ROCTAVIAN’s clinical and logistical requirements
SPEAKER:

Henry Mead PhD, MBA, MPA
Senior Director, BioMarin Hemophilia North America Medical Affairs
Henry Mead has worked in medical affairs for over two decades in North America and globally. Over the last 15 years it has been his privilege to work closely with hemophilia researchers, clinical investigators, patient advocates, and hemophilia nurses. His experience includes leading medical affairs team’s ensuring they adhere to the principles of credible, accurate and balanced scientific dissemination of data to external customers. Additionally, identifying, vetting, and supporting investigator-initiated research and publishing relevant findings has been an important component of knowledge transfer activities.

🟥 Member Webinar : Hemophilia Alliance Presents - Gene Therapy Update
2023-07-13 14:00 - 15:00
Date: Thursday, July 13, 2023
Time: 2:00pm – 3:00pm ET

TOPIC:
Gene Therapy Update
OBJECTIVES:

Review the status of Roctavian and Hemgenix, gene therapy products and the Alliance contracts with the Biomarin and CSL.
Provide information on how to obtain the products and ensure they are infusion ready.
Examine the rationale behind Biomarin’s decision to use Specialty Pharmacies and TAP for distribution and discuss how using TAP would benefit Hemophilia Treatment Centers (HTCs).
Conduct a comprehensive review of the Alliance Contract with CSL and Biomarin.
Compare and analyze the pricing model and rebate program offered by Biomarin and CSL, specifically in relation to gene therapy products.

We encourage you to submit questions ahead of time you would like to be answered or are just curious about.
SPEAKER:

Joe Pugliese, President & CEO Hemophilia Alliance

🟦 Non-Member Event : 340B Coalition Summer Conference
2023-07-10 - 2023-07-12
Date: July 10th – 12th (Washington, DC)
Click here for info.

🟥 Member Webinar : Hemophilia Alliance Hosts - Value Based Agreements with Payers from Takeda
2023-06-29 14:00 - 15:00
Date: Thursday, June 29, 2023
Time: 2:00pm – 3:00pm ET

TOPIC:
Value Based Agreements with Payers
OBJECTIVES:
Takeda is excited to share more information about the transition from transactional relationships with payers to value based agreements in a real world example. Mark will provide an overview of how these agreements work, the metrics used, and how that fits with hematology. Takeda’s goal is to provide additional perspective on a complicated payer landscape.
SPEAKER:

Mark Gimbert, VP Specialty Pharmacy and Channel Management at Takeda
Mark started at Takeda in 1999 as a sales representative and has held various roles of increasing responsibility. He pioneered a Strategic Partnerships Function within Takeda, focused on accelerating Partner for Access imperatives, construct value-based contracts, and identify tools and resources to assist patients with access to medications. In his current role, Mark has full accountability for leadership and management of all U.S. Managed Markets Specialty Pharmacy relationships, strategic direction, and access.

🟦 Non-Member Event : ISTH 2023 Congress
2023-06-24 - 2023-06-28
Date: June 24th – 28th (Montreal, Canada)
Click here for info.
