Hemophilia Alliance

🟥 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 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 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 (America/New_York)
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 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
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 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.

🟦 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 Spring Members Meeting & Hemophilia Alliance Hill Day
2024-04-15 - 2024-04-18
Date: April 15 – 18
Location: Washington, DC

Monday 4/15 – Welcome Reception
Tuesday 4/16 – Spring Members Meeting
Wednesday 4/17 – Spring Members Meeting, Hill Day Training and Joe’s Retirement Party
Thursday 4/18 – Hemophilia Alliance Hill Day

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 Genentech - Reinforcing 10+ years of clinical trial experience with a subcutaneous prophylaxis treatment
2024-05-07 14:00 - 15:00
Date: Tuesday, May 7, 2024
Time: 2:00pm – 3:00pm ET

TITLE:
Reinforcing 10+ years of clinical trial experience with a subcutaneous prophylaxis treatment, including the latest data in infants
WEBINAR OBJECTIVE:
Dr. Mike Silvey will share his perspective on managing patients with hemophilia A using a subcutaneous prophylactic treatment. The presentation will include the pivotal efficacy and safety data that is the foundation of the ongoing clinical trial program in patients with and without FVIII inhibitors, including an overview of real-world experience. Dr. Silvey will share updates from the latest trial in infants and previously untreated patients. The webinar will feature brain teasers, and showcase social media that’s engaging the hemophilia community and polls. Q&A session will follow the program.
SPEAKER:

Michael Silvey, DO
HTC Director – Children’s Mercy HTC, Kansas City, MO.
Associate Professor of Pediatrics – University of Missouri-Kansas City School of Medicine.
SPEAKER’S BIO:
Michael Silvey, DO, is an Associate Professor of Pediatrics at the University of Missouri-Kansas City School of Medicine and the Associate Director of the Kansas City Regional Hemophilia Treatment Center at Children’s Mercy Hospital in Kansas City, Missouri. He received his medical degree from The Chicago College of Osteopathic Medicine. He completed his general pediatrics residency at the University of Texas Health Science Center-San Antonio and his pediatric hematology/oncology fellowship at Children’s Mercy Hospital in Kansas City, Missouri. His primary clinical and research interests are hemophilia, inherited platelet function disorders, and the coagulation system in patients with congenital heart disease as well as patients need ECMO. Dr. Silvey serves as a primary investigator for several research studies involving both bleeding and clotting disorders. In addition to enjoying taking care of pediatric bleeding disorder patients, he also likes to spend lots of time with his wife and two children and getting out on the golf course.

🟥 Member Webinar : Hemophilia Alliance Presents - Hemophilia Alliance Network Services/Emerging Therapy Solutions
2024-05-14 14:00 - 15:00
Date: Tuesday, May 14, 2024
Time: 2:00pm – 3:00pm ET

TITLE:
Hemophilia Alliance Network Services/Emerging Therapy Solutions
A Gene Therapy Payer Contract
WEBINAR DESCRIPTION:
The past twelve to eighteen months have been landmark times for gene therapy treatments for individuals with bleeding disorders. While the third party payers, reinsurers and prescription benefit plans have begun forming strategies for benefit plan coverage, pricing, patient qualifications and follow up reporting. Hemophilia Alliance Network Services (HANS) has been hard at work arranging for adequate contractual arrangements with important entities influencing Payor behavior and strategies for the use of Gene Therapy. The HANS goal was to create relationships with entities that could offer acceptable contractual terms but importantly influence the common prior authorization process to provide a clear path for delivery of the product, provision of the service to Hemophilia Treatment Center (HTC) patients, and subsequent confidence in the payment for this high-cost therapy.
HANS is pleased to announce that it has executed an Agreement with Emerging Therapy Solutions (ETS) effective January 1, 2024. Emerging Therapy Solutions® (ETS), an industry leader in providing cutting-edge services to help payers and other risk-bearing entities prepare for the accelerating growth in cell and gene therapies and other high-cost, complex treatments. This webinar will provide a high-level overview from HANS leadership regarding the Agreement with ETS as well as how HTCs can gain access to this Agreement. HANS will ask the leadership from ETS to describe the business model and services they provide, the ETS customer base and provide important information on how to HTCs can intersect with ETS to obtain necessary approvals for gene therapy treatments for qualified patients. During this one-hour webinar you will hear important details on the authorization process, clinical review and administrative details that provide a clearer path to benefit coverage and payment for HTC patients rather than the time-consuming process of single case agreements with payors that many HTCs have experienced thus far.
This webinar is available to ALL Hemophilia Treatment Centers that are members of the Hemophilia Alliance, it is NOT restricted to participating members of the Hemophilia Alliance Network Services Agreements. If an HTC is not a HANS member today and wishes to join HANS to access the ETS agreement , please reach out to your Member and Community Relations Team Member who will assist you. Administrators, Finance team members, Pharmacists and Physicians are ideal candidates to attend this webinar. However, it is open to any interested employee of member HTCs.
SPEAKERS & BIOs:

Roland Lamy, Jr. – Vice President of Payer Relations
Roland Lamy has held a variety of leadership positions in the healthcare industry including sales management, underwriting, employee benefit and rate development, hospital and physician negotiations and contracting, and government programs oversight and business management. Click here to learn more about Roland…

Zack Duffy – Director of Member & Community Relations
Most recently, Zack Duffy was the Program Administrator for The Hemophilia Center at Oregon Health & Science University (OHSU) overseeing the administrative and business functions of the clinic and pharmacy. He started with the Factor Program at The Hemophilia Center in 2013, when it was a 340B physician dispense model. In 2017, he led the transition from a physician dispense to a pharmacy dispensing model. Click here to learn more about Zack…

🟥 Member Event : 2024 Physical Therapists CE Conference
2024-05-15 - 2024-05-17 | Search
Date: May 15 – 17
Location: Aurora, CO

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 Bayer - Clinical review of the Jivi® PROTECT VIII Trial and insights from HEM-POWR: A Real-World Evidence (RWE) Study of Jivi®
2024-06-05 13:00 - 14:00
Date: Wednesday, June 5, 2024
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®
WEBINAR 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 the 4th interim analysis of HEM-POWR, a multinational, open-label, prospective, non-interventional, multicenter cohort study of Jivi.
There will also be a review of the Q2 2024 340B pricing for the Bayer Hemophilia A portfolio under the Hemophilia Alliance Contract.

SPEAKER:

Dr. Vanessa K. Salinas-Lunas
Pediatric Hematology
Center for Inherited Blood Disorders
SPEAKER’S BIO:
N/A

🟥 Member Event : 2024 Nurses CE Conference
2024-06-10 - 2024-06-12
Date: June 10 – 12
Location: Portland, Maine

🟥 Member Webinar : Hemophilia Alliance Hosts – Practice Considerations for ROCTAVIAN™ (valoctocogene roxaparvovec-rvox) from BioMarin
2024-06-20 14:00 - 15:00
Date: Thursday, June 20, 2024
Time: 2:00pm – 3:00pm ET

Title: Practice Considerations for ROCTAVIAN™ (valoctocogene roxaparvovec-rvox)
Objectives:

Review coverage and typical prior authorization criteria for ROCTAVIAN

Review considerations and pricing education available for single-case agreements

Hemophilia Alliance’s gene therapy support for Member Hemophilia Treatment Centers

Speakers:

Josh Sammon, PharmD, Senior Director, Market Access, Hemophilia

Hemophilia Alliance Team

🟥 Member Webinar : Hemophilia Alliance Hosts – Wilate Prophylaxis in VWD – Results from the WIL-31 Study from Octapharma
2024-06-25 13:00 - 14:00
Date: Tuesday, June 25, 2024
Time: 1:00pm – 2:00pm ET

Title: Wilate Prophylaxis in VWD – Results from the WIL-31 Study
Objectives:
1) Understand the bleeding symptoms experienced by folks with von Willebrand disease
2) Understand the benefits of wilate prophylaxis in von Willebrand disease across different ages and types
3) Understand the lack of von Willebrand factor and FVIII accumulation during wilate prophylaxis
Speaker:

Claudio Sandoval
Senior Director of Scientific & Medical Affairs at Octapharma
Claudio Sandoval is the Senior Director of Scientific & Medical Affairs at Octapharma. Before his current role he was a pediatric hematologist-oncologist for 30 years caring for children with bleeding disorders, cancer, sickle cell disease, and other maladies. Claudio graduated from New York Medical College and trained at Schneider Children’s Hospital in New Hyde Park, NY and St. Jude Children’s Research Hospital in Memphis, TN.

🟥 Member Webinar : Hemophilia Alliance Presents - Navigating Patient Assistance and Copay Assistance Schemes
2024-07-11 13:00 - 14:00
Date: Thursday, July 11, 2024
Time: 1:00pm – 2:00pm ET

Title:
Understanding the difference between Copay Accumulators, Copay Maximizers, and Alternative Funding Programs.
Objectives:

In this comprehensive session, attendees will gain a deep understanding of three critical elements of the difference between patient access barriers: copay accumulators, copay maximizers, and alternative funding programs. This talk will demystify these concepts, explain how each mechanism operates, their impact on patients’ out-of-pocket costs, and the broader implications for patients, providers and insurers.
By the end of this session, attendees will be equipped with the knowledge and tools to better understand the nuances of copay accumulators, copay maximizers, and alternative funding programs. They will leave with actionable strategies to support patients in managing their out-of-pocket costs while maintaining access to essential medications.

Speakers:

Becky Burns
COO & CFO of the Bleeding and Clotting Disorders Institute, Peoria, IL. Click here to learn more about Becky.

Kollet Koulianos
Hemophilia Alliance Payer Relations Consultant. Click here to learn more about Kollet.

🟥 Member Webinar : Hemophilia Alliance Hosts – An interactive discussion on VWD case-based experience from Takeda
2024-07-16 14:00 - 15:00
Date: Tuesday, July 16, 2024
Time: 2:00pm – 3:00pm ET

Discussion Topic: VWD Case-Based Experience
Description:
Join our expert, Dr. Maissaa Janbain, MD, for an interactive discussion about managing patients who are living with VWD. Dr. Janbain will guide you through a VWD case-based experience, including reviewing treatment history and discussing how VONVENDI [von Willebrand Factor (Recombinant)] may be used for on-demand treatment of gastrointestinal (GI) bleeding.
Speaker:

Maissaa Janbain, MD
Maissaa Janbain, MD is Currently an Associate Professor of Clinical Medicine at Tulane University; and serves as the Director of the Louisiana Center for bleeding and clotting disorders. Dr. Janbain has received multiple awards and grants (including National Hemophilia Foundation Fellowship Award 2014, Louisiana Clinical and Translational Research Roadmap Scholarship 2015, HTRS Mentored Research Award 2017 and School of Medicine Scientist Pipeline Program 2017) that allow her to focus her research and time on taking care of patients with benign hematologic disorders, with an emphasis on bleeding disorders such as hemophilia and von Willebrand disease but also thrombosis and platelet disorders. She has presented at several national and international meetings and her research work has been published in several journals. Dr. Janbain is a founding member of the VENUS (venous thromboembolic network of the US) network and a member of the steering committee of ADVANCE US, co- chairing the project sub-committee.

🟥 Member Webinar : Hemophilia Alliance Presents - Genetic Testing Program
2024-08-21 13:00 - 14:00
Date: Wednesday, August 21, 2024
Time: 1:00pm – 2:00pm ET

Title:
Hemophilia Alliance Genetic Testing Program
Hemophilia Alliance has introduced a new Genetic Testing Program as of August 1, 2024. This initiative offers genetic testing for individuals with Hemophilia A, Hemophilia B, and von Willebrand’s disease. The program is specifically designed for patients receiving care at Hemophilia Alliance Member Treatment Centers who either lack insurance coverage, are ineligible for other free genetic testing programs or studies, or face prohibitive out-of-pocket costs. The testing will be conducted by Bloodworks in Washington state and Versiti in Wisconsin.
Who will be eligible for free testing?

Patients receiving care at a Hemophilia Alliance Member HTC who are not eligible for other available genetic testing free programs or studies AND meet one or more of the following criteria:

Patient does not have insurance coverage.
Patient does not have coverage for genetic testing under their insurance plan, i.e. not a covered benefit.
Patients who cannot afford the out-of-pocket expenses associated with the testing and are at, or below, 400% of the Federal Poverty Level.

Additional information on the program and how to get started can be found here.

🟦 Non-Member Event : 2024 NBDF BDC
2024-09-12 - 2024-09-14
Date: September 12 – 14, 2024 (Atlanta, GA)
Click here for info.

🟦 Non-Member Event : 2024 Foundation for Women & Girls with Bleeding Disorders
2024-09-13 - 2024-09-15
Date: September 13 – 15, 2024 (Long Beach, CA)
Click here for info.

🟦 Non-Member Event : 2024 Self Insurance Institute of America Annual Conference
2024-09-22 - 2024-09-24
Date: September 22 – 24, 2024 (Phoenix, AZ)
Click here for info.

🟦 Non-Member Event : 2024 Partners Physician Academy
2024-09-23 - 2024-09-27
Date: September 23 – 27, 2024 (Carmel, IN)
Click here for info.

🟥 Member Event : 2024 Fall Members Meeting
2024-10-09 - 2024-10-11 | New Orleans Marriott Warehouse Arts District Hotel, 859 Convention Center Boulevard, New Orleans, LA, 70130, United States
Date: October 9 – 11
Location: New Orleans, Louisiana

To download a copy DRAFT AGENDA, click here.
To download a copy GLOSSARY 340B TERMS, click here.

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

🟥 Member Webinar : Hemophilia Alliance Hosts - Shining a Spotlight: The Journey to Optimize Care in Women and Girls with Hemophilia A
2024-10-17 12:00 - 13:00
Date: Thursday, October 17, 2024
Time: 12:00pm – 1:00pm ET

Topic:
Shining a Spotlight: The Journey to Optimize Care in Women and Girls with Hemophilia A
Objectives:

Shine a light on the topic of women & girls with Hemophilia A
Discuss the complexities in the diagnosis of women & girls with Hemophilia A
Review real-world experiences of women & girls with Hemophilia A

Speaker:
Angela Weyand, MD Co-director, Hemophilia Treatment Center, Clinical Associate Professor of Pediatrics, University of Michigan C.S. Mott Children’s Hospital

Dr. Weyand is pediatric hematologist/oncologist from University of Michigan C.S. Mott Children’s Hospital where she is a clinical associate professor. She received her medical degree from U of Michigan and did her residency in Seattle Children’s Hospital, her fellowship at U of Michigan and her post doc in Hemophilia and Bleeding Disorders with the National Hemophilia Foundation Fellowship Program.
She has a particular interest in adolescent girls with bleeding and clotting disorders and issues impacting their care including quality of life.

🟦 Non-Member Event : 2024 Advanced Topics I Nursing
2024-10-20 - 2024-10-22
Date: October 22 – 22, 2024 (Indiana, IHTC)
Click here for info.

🟦 Non-Member Event : 2024 ATHN Data Summit
2024-10-22 - 2024-10-23
Date: October 22 – 23, 2024 (Atlanta, GA)
Click here for info.

🟦 Non-Member Event : 2024 NBDF Red Tie Soiree
2024-10-25
Date: October 25, 2024 (Chicago, IL)
Click here for info.

🟥 Member Webinar : Hemophilia Alliance Presents - Navigating The Enhanced Requirements Of DSCSA As A 340B Covered Entity
2024-10-30 13:00 - 14:00
Date: Wednesday, October 30, 2024
Time: 1:00pm – 2:00pm ET

Title:
Navigating The Enhanced Requirements Of DSCSA As A 340B Covered Entity
Objectives:

Review a brief history of the Drug Supply Chain Security Act and the new enhanced requirements.
Understand where covered entities and their affiliated contract pharmacies fit into the supply chain.
Discuss the applicable requirements and potential pathways to compliance.

Speaker:
Michael Fusaro, PharmD
Head of Regulatory Compliance & Senior Pharmacist, The Alliance Pharmacy

Michael has over 10 years of experience as a pharmacist working with the bleeding disorder community and as the son of a hemophiliac, a lifetime of personal experience. He graduated St. John’s University with his PharmD. in 2008.
As the Director of Regulatory Compliance & Senior Pharmacist of The Alliance Pharmacy (TAP), Michael oversees the revision and implementation of policies and procedures to ensure compliance with local, state, and federal laws as well as meeting the standards of our numerous accreditations. Michael maintains active pharmacist licenses in 12 states including New York where he resides.

🟥 Member Webinar : Hemophilia Alliance Hosts - Explore KOVALTRY® With Confidence by Bayer
2024-11-06 14:00 - 15:00
Date: Wednesday, November 6, 2024
Time: 2:00pm – 3:00pm ET (Updated Starting Time)

Topic:
Explore KOVALTRY® With Confidence
Overview:
Clinical Trial Results, Dosing and Pharmacokinetics of KOVALTRY® in adults, adolescents and children
Speaker:
Maissaa Janbain, M.D., MSCR
Associate Director, Louisiana Center for Bleeding and Clotting Disorders
Associate Professor of Medicine, Tulane University New Orleans, LA

Maissaa Janbain, MD., MSCR is Currently an Associate Professor of Clinical Medicine at Tulane University; and serves as the Director of the Louisiana Center for bleeding and clotting disorders. Dr. Janbain has received multiple awards and grants (including National Hemophilia Foundation Fellowship Award 2014, Louisiana Clinical and Translational Research Roadmap Scholarship 2015, HTRS Mentored Research Award 2017 and School of Medicine Scientist Pipeline Program 2017) that allow her to focus her research and time on taking care of patients with benign hematologic disorders, with an emphasis on bleeding disorders such as hemophilia and von Willebrand disease but also thrombosis and platelet disorders. She has presented at several national and international meetings and her research work has been published in several journals. Dr. Janbain is a founding member of the VENUS (venous thromboembolic network of the US) network and a member of the steering committee of ADVANCE US, co- chairing the project sub-committee.

🟦 Non-Member Event : 2024 Basic
2024-11-11 - 2024-11-13
Date: November 11 – 13, 2024 (Indiana, IHTC)
Click here for info.

🟦 Non-Member Event : 2024 Mountain States Hemostasis Network Regional Meeting
2024-11-12 - 2024-11-15
Date: November 12 – 15, 2024 (Girdwood, AK)
Click here for info.
