Hemophilia Alliance

🟥 Member Event : 2024 Medical Providers & Business Administrators Meeting
2024-11-14 18:00 - 2024-11-16 15:30 (America/New_York)
Date: November 14 – 16
Location: Las Vegas, Nevada

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

🟦 Non-Member Event : 2024 NBDF Chapter Leadership Seminar
2024-11-15 - 2024-11-18
Date: November 15 – 18, 2024 (San Diego, CA)
Click here for info.

🟦 Non-Member Event : 2024 Motivational Interviewing Workshop
2024-11-18 - 2024-11-20
Date: November 18 – 20, 2024 (Indiana, IHTC)
Click here for info.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar On Health Equity From Takeda
2024-11-21 14:00 - 15:00
Date: Thursday, November 21, 2024
Time: 2:00pm – 3:00pm ET

Title:
Health Equity
Description:
Please join Takeda for a webinar on Health Equity and how Takeda is making progress towards its goal of improving equitable access to treatment and care for all. Anthea will share Takeda’s broad strategy, how it relates to bleeding disorders, and offer opportunities for action to advance health equity goals.
Speaker:
Anthea Cherednichenko, VP US Hematology Franchise Head

Anthea leads the sales and marketing teams for Takeda’s Hematology portfolio. Anthea’s values aim to inspire positive patient outcomes through inclusive purpose-driven teams that drive innovation. Anthea previously served as the General Manager for Takeda Austria. Prior to that role, she was in Global and European leadership roles in Hematology based out of Switzerland. Originally from Australia, Anthea spent her early career years in medical device and health IT marketing roles in both Australia and Asia, before joining Baxter (later acquired by Takeda) in 2013. Anthea holds a Master of Public Health from the University of Sidney and Master of Business Administration from Victoria University.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Sanofi On Real World Surgical Experiences with Altuviiio
2024-12-04 12:00 - 13:00
Date: Wednesday, December 4, 2024
Time: 12:00pm – 1:00pm ET

Topic:
Real World Surgical Experiences with Altuviiio
Description:
This program will focus on sharing real-world experiences with Altuviiio, especially within a surgical context. We’ll kick things off with an introduction to Altuviiio, followed by some in-depth discussions on surgical experiences. We’ll wrap up with a summary and a Q&A segment, which I’m sure will spark some great conversations!
Speaker:
Shveta Gupta, MD

Shveta Gupta, MD, is a Pediatric Hematologist Oncologist and Medical Co-Director at Alliance OBGYN. Dr. Gupta also serves a the Medical Director for IQVIA.
Dr. Gupta received her medical degree with honors and distinction from All India Institute of Medical Sciences in New Delhi, India. She completed both an internship and residency in pediatrics at Children’s Hospital Los Angeles, where she also completed a fellowship in hematology oncology. Her primary clinical interests include sickle cell disease as well as bleeding and clotting disorders, including hemophilia and von Willebrand disease. In addition, she pursued further training in transfusion medicine and coagulation disorders at Baylor College of Medicine in Houston where she acquired additional expertise in urgent hemotherapy and coagulation consultation in critically ill pediatric patients.
In 2016-2017, Dr. Gupta served as chair of the Hemostasis and Thrombosis Research Society Fellows Network. She is a member of the American Society of Hematology, the Hemostasis and Thrombosis Research Society, and the American Association of Blood Banks.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from CSL Behring - Learn about HEMGENIX from the patient perspective
2024-12-11 13:00 - 14:00
Date: Wednesday, December 11, 2024
Time: 1:00pm – 2:00pm ET

TOPIC:
Learn about HEMGENIX from the patient perspective
OBJECTIVE:
Michael will share his personal experience after receiving HEMGENIX
RECOMMENDED AUDIENCE:
HTC providers, social workers, administration and support staff
SPEAKER:
Michael – Common Factors Advocate Hemophilia B

My Life at a Glance – At the age of four, I was diagnosed with hemophilia B factor IX deficiency. My parents told me that this disorder would limit me and that I would most likely have to progress through life with caution. So, at a very young age, I was forced to make an adult decision. I had to either learn how to manage
my hemophilia or accept the possible limitations that were awaiting a severe hemophiliac. When I was a kid, I made sure to not let hemophilia get in the way by staying on top of managing it. It was hard to accept help from anyone because I wanted to do it on my own. It was my superpower, not theirs.
My previous local support group was amazing. They organized scholarships and had activities that were safe for hemophilia patients. It was a close-knit community. I even volunteered there! After finding the right treatment for me, I have noticed myself living a more stress-free lifestyle; I no longer have to infuse a minimum of twice a month to maintain my factor levels.
My Message to the Community – Hemophilia is our superpower. It’s time to don that cape and advocate for yourself.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Pfizer on HYMPAVZI: An anti-tissue factor pathway inhibitor
2024-12-17 15:00 - 16:00
Date: Tuesday, December 17, 2024
Time: 3:00pm – 4:00pm ET

TOPIC:
HYMPAVZI: An anti-tissue factor pathway inhibitor
OBJECTIVE:
To educate attendees on the novel mechanism of action of HYMPAVZI, the Ph3 clinical trial results and indicated dosage and administration.
INTENDED AUDIENCE:
HCP
SPEAKER:
Dr. Jennifer Schumacher, PhD, Senior Medical Director, Hemophilia

Jennifer Schumacher Sr. Medical Director has over 21 years of Medical Affairs and Biotech Industry experience. Currently, a senior medical director in hemophilia, Jennifer is the US medical lead for marstacimab. During her tenure at Pfizer, she has held several positions beginning in US Medical Affairs in Oncology and transitioning to medical director in Rare Disease where she has lead the global medical team for transthyretin amyloid (ATTR) cardiomyopathy and served as publications lead. Jennifer joined the US hemophilia medical team in 2023.
Jennifer received her PhD in Pharmacology from the University of Minnesota, Minneapolis, USA and a B.S. in Biotechnology and Chemistry from St. Cloud State University, St. Cloud, USA.
Jennifer is based in Minneapolis, Minnesota and enjoys spending time with her husband and two children. She loves reading, cooking and the great outdoors, snowmobiling in the winter and spending time with family and friends at their cabin in the summer.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar from Novo Nordisk - Unmet Needs in Current Hemophilia Care: From Burdens to Breakthroughs
2024-12-18 13:00 - 14:00
Date: Wednesday, December 18, 2024
Time: 1:00pm – 2:00pm ET

Title:
Unmet Needs in Current Hemophilia Care: From Burdens to Breakthroughs
Description and Session Objectives:
To provide a clinical overview of the cost and treatment burden across all hemophilia types, the experience with current therapy, and unmet needs that may be addressed with novel therapies.
Target Audience:
All HTC Staff
Speakers:
Parin Chikani PharmD, MBA
Ryan Rodriguez PharmD, MS, BCPS

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.

Ryan Rodriguez is a Medical Liaison for rare blood disorders at Novo Nordisk covering the Midwest. His responsibilities include learning from and sharing medical information with clinicians who treat patients with hemophilia and other bleeding disorders, aligning with his passion for evidence-based patient care. Prior to joining Novo Nordisk, Ryan earned his PharmD degree from the University of Florida, and then served as Clinical Associate Professor at the University of Illinois Chicago College of Pharmacy, where he also earned his Master’s degree in epidemiology. Throughout his career, Ryan has been involved in medical communications, evidence generation and publication, and formulary management for various public and private entities.

🟥 Member Event : 2025 Pharmacists CE Conference
2025-01-22 - 2025-01-24
Date: January 22 – 24, 2025
Location: The Westin San Diego Gaslamp Quarter, San Diego, CA 92101

Hemophilia Alliance is proud to announce the 4th Annual Pharmacists CE Conference. The conference is designed specifically for Hemophilia Alliance Member HTC pharmacists with direct responsibility for 340B HTC dispensations.
There will be 40 spaces available for the in-person conference. Attendees will be randomly chosen from the pool of applicants. For those who cannot attend in person, a virtual option will be available.
Applicants will be notified by November 22nd of their invitation to attend the conference. If you are invited to attend the conference, please verify that you will be able to attend the conference in its entirety before accepting. We will begin working on flight arrangements as soon as November 25th, 2024.
Attendees will require a commitment of arrival on Wednesday, January 22nd by 6:30pm, with the meeting ending at 3:30 pm on Friday, January 24th. Hemophilia Alliance will underwrite each participant’s air travel, transfers to and from the hotel, hotel accommodations and group meals.
The application period is now open through November 15th, 2024

Please contact Mark Plencner with any questions regarding this registration at mark@hemoalliance.org or 701-318-2910.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from BioMarin on ROCTAVIAN: Improving Patient Outcomes - Latest Data & Support Initiatives
2025-02-19 13:00 - 14:00
Date: Wednesday, February 19, 2025
Time: 1:00pm – 2:00pm ET

TITLE:
ROCTAVIAN: Improving Patient Outcomes – Latest Data & Support Initiatives
OBJECTIVE:
Join us for a webinar on ROCTAVIAN (valoctocogene roxaparvovec), the groundbreaking gene therapy for severe hemophilia A. This webinar will delve into the latest clinical data updates, showcasing the long-term efficacy and safety of ROCTAVIAN. We’ll also hear a firsthand experience from one of the patients who has received ROCTAVIAN, offering valuable insights into the real-world impact of this therapy. Finally, we will explore the comprehensive support programs available to patients, ensuring access to information, resources, and assistance throughout the treatment journey.
INTENDED AUDIENCE:
Providers, HTC staff, business administrators and decision makers
SPEAKERS:

Patrick Fogarty, Executive Medical Director, US Medical Lead, Hemophilia, GMAF
Nick Campbell, Senior Director, Patient Support Programs

🟥 Member Event : 2025 Linda Gammage Social Workers CE Conference
2025-02-26 18:00 - 2025-02-28 14:00
Date: February 26 – 28, 2025
Location: Austin, TX

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

🟥 Member Event : 2025 Spring Members Meeting
2025-03-09 18:30 - 2025-03-11 15:30
Date: March 9 – 11, 2025
Location: Salt Lake City, Utah

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

🟥 Member Webinar : Hemophilia Alliance Presents - Updates from Washington: Administration and Congressional Actions
2025-03-19 12:00 - 13:00
Date: Wednesday, March 19th, 2025
Time: 12:00pm – 1:00pm ET

WEBINAR TOPIC:
Updates from Washington: Administration and Congressional Actions
OBJECTIVE:

The current status of government funding for fiscal year 2025.
The potential impact of the new Administration’s early actions, including Executive Orders, reduction in agency staffing, changes to the regulatory process and how this may impact federal agencies, programs, and policies important to HTCs.
Expected Congressional actions on a Budget Reconciliation bill(s) to extend tax cuts and find savings in Medicaid and Medicare and the future of 340B Reforms.

TARGET AUDIENCE:
All HTC staff or HTC Leadership, Administration and Policy Teams
SPEAKERS:

Dean Hindenlang, PhD, Hemophilia Alliance Vice Chair
Ellen Riker and Miriam Goldstein, Hemophilia Alliance Federal Policy Advisors, Artemis Policy Group

Dean M. Hindenlang has served the nonprofit and government sectors for almost 30 years, focusing on strategic planning, administrative oversight and governance, and coalition-building through an equity-based lens. As Director of Public Policy and Strategic Initiatives with Cascade Hemophilia Consortium, his work focuses on coalition-building while helping ensure that individuals needing assistance are advocated for in community and government-based capacities. He is a proven leader in assisting members of marginalized and underserved communities.
Mr. Hindenlang holds a Ph.D. in Public Policy and Administration, completing his doctoral dissertation on equity in community-based programming. He has a Master of Public Administration, a Master of Science in Marketing and Communication, a Master of Healthcare Administration, and a bachelor’s degree in English. Additionally, he serves as an adjunct professor, doctoral faculty methodologist, and subject matter expert at Franklin University. He also offers undergraduate instruction on social justice and cultural awareness at Southern New Hampshire University.
As the Director of Public Policy and Strategic Initiatives, Dean serves Cascade HC by engaging local and state authorities, as well as elected officials, on matters of public policy actions, projects, and patient education and advocacy.

Ellen Riker is a Principal with the Artemis Policy Group, an association management and lobbying firm she established with Johanna Gray and Elizabeth Karan in April 2020 in Washington, DC. Ellen advises several national patient organizations and medical societies on federal government affairs and health policy and has worked with the Hemophilia Alliance since 2010. As a federal policy advisor and lobbyist, Ellen has managed federal strategies for corporate and non-profit organizations, specializing in public and private insurance reimbursement and coverage policies, biomedical and health services research, and public health programs.
Ellen has worked with the many agencies of the Department of Health and Human Services and has been involved in the development of legislation coming out of the House and Senate committees with jurisdiction over Medicare, Medicaid, and public health service programs. Ellen served on the professional staff of the House Energy and Commerce Committee from 1983 – 1988, with particular focus on health policy. Ellen received her master’s degree in health administration from Xavier University and a B.A. with honors from the University of Cincinnati.

Miriam Goldstein joined the Artemis Policy Group as a Senior Policy Advisor in August 2024 after more than seven years at Hemophilia Federation of America. Miriam focuses on federal and state policies impacting patient access to coverage, access to care, and affordability. Over the course of her legislative and regulatory work, Miriam has developed expertise in the Affordable Care Act and insurance reform, Medicaid eligibility and program requirements; and other keystones of the health policy landscape.
Before her time at HFA, Miriam worked as an attorney in private practice and with the US Securities and Exchange Commission. Miriam earned her J.D. degree from the University of Pennsylvania and her B.A. in history from Yale. She is admitted to practice law in D.C. Miriam lives in Arlington, Virginia, and in her free time can often be found cycling on local bike trails with her husband Dave.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Takeda on FVIII Portfolio
2025-03-20 14:00 - 15:00
Date: Thursday, March 20th, 2025
Time: 2:00pm – 3:00pm ET

TITLE:
Takeda FVIII Portfolio
OBJECTIVE:
Please join Takeda leadership to review Takeda FVIII Products & Resources Available.
INTENDED AUDIENCE:
All HTC staff
SPEAKER:
Anthea Cherednichenko, VP US Hematology Franchise Head
Anthea leads the sales and marketing teams for Takeda’s Hematology portfolio. Anthea previously served as the General Manager for Takeda Austria. Prior to that role, she was in Global and European leadership roles in Hematology based out of Switzerland. Originally from Australia, Anthea spent her early career years in medical device and health IT marketing roles in both Australia and Asia, before joining Baxter (later acquired by Takeda) in 2013. Anthea holds a Master of Public Health from the University of Sidney and Master of Business Administration from Victoria University.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Novo Nordisk on Alhemo (concizumab-mtci): A new option for patients living with hemophilia A or B with inhibitors
2025-04-03 14:00 - 15:00
Date: Thursday, April 3rd, 2025
Time: 2:00pm – 3:00pm ET

WEBINAR TOPIC:
Alhemo (concizumab-mtci): A new option for patients living with hemophilia A or B with inhibitors
OBJECTIVE:
To provide a prescribing information overview of the recently FDA approved medication, Alhemo (concizumab-mtci), for patients living with hemophilia A or B with inhibitors.
INTENDED AUDIENCE:
All HTC staff
SPEAKER:
Craig Schmidt, PharmD, Medical Accounts Associate Director – Novo Nordisk Medical Affairs

Before joining Novo Nordisk, Craig had been in the Community Pharmacy and Managed Care settings for 13 years and held various roles and leadership positions. Of note, Craig was the Pharmacy Director of a Regional Health Plan that served over a million Medicaid, Medicare, and Commercially insured patients within the New York Metro area.
Craig currently serves as a Medical Accounts Director for Novo Nordisk, a global healthcare company with 100 years of innovation and leadership in diabetes, obesity, and rare disease care. Craig is responsible for providing scientific support to payers, specialty pharmacies, and other stakeholders that advance the care for patients living with rare diseases.
Craig earned his Doctor of Pharmacy from St. John’s University, and is currently based out of Queens, NY.

🟦 Non-Member Event : 2025 World Hemophilia Day
2025-04-17
Date: April 17th, 2025
Click here for info.

🟦 Non-Member Event : WFH 2025 Comprehensive Care Summit
2025-04-23 - 2025-04-25
Date: April 23rd – 25th
Location: Dubai

🟥 Member Event : 2025 Nurses CE Conference
2025-04-27 18:30 - 2025-04-29 15:30
Date: April 27 – 29, 2025
Location: Orlando, FL

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

🟥 Member Event : 2025 New HTC Staff Meeting
2025-04-29 18:30 - 2025-05-01 15:30
Date: April 29 – May 1, 2025
Location: Orlando, FL

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 on Complications and challenges associated with hemophilia and a rebalancing approach with HYMPAVZI™ (marstacimab-hncq)
2025-05-06 14:00 - 15:00
Date: Tuesday, May 6th, 2025
Time: 2:00pm – 3:00pm ET

WEBINAR TOPIC:
Complications and challenges associated with hemophilia and a rebalancing approach with HYMPAVZI™ (marstacimab-hncq)
OBJECTIVES:

Educate attendees on complications and challenges associated with hemophilia, the novel mechanism of action of HYMPAVZI, the BASIS Ph3 clinical trial results and dosage and administration of HYMPAVZI
Discuss hypothetical patients who may benefit from HYMPAVZI along with a Q&A session.

SPEAKER:

Dr. Robert Sidonio, Jr., MD, MSc

Medical Director of Hemophilia, Medical Director of the Clinical Research Office Aflac Cancer & Blood Disorders Center Children’s Healthcare of Atlanta
Associate Professor of Pediatrics, Emory University School of Medicine

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Sanofi - Exploring data and expert perspectives on Qfitlia™ (fitusiran)
2025-05-07 13:00 - 14:00
Date: Wednesday, May 7th, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TOPIC:
Exploring data and expert perspectives on Qfitlia™ (fitusiran)
OBJECTIVE:
During this program, we will explore data and expert perspectives on Qfitlia™ (fitusiran), a newly approved prophylactic treatment for patients with hemophilia A and B, with or without inhibitors.
SPEAKER:
Vanessa Salinas, MD – Center for Inherited Blood Disorders Orange, CA
Dr. Vanessa Salinas is board certified in pediatric hematology-oncology and in general pediatrics. She completed her pediatric hematology-oncology fellowship at CHLA and completed a Coagulation and Bleeding Disorders fellowship at CHLA. She specializes in all areas of hematology with special focus in hemophilia and rare bleeding disorders, and red cell disorders, including sickle cell disease and thalassemia.
Dr. Salinas is interested in helping our hemophilia community and empowering our patients and families, through education and participation. She works closely with the Hemophilia Foundation of Southern California and was awarded as the Medical Professional of the Year in 2019. Dr. Salinas participates in clinical research studies as principal investigator as well as co-investigator. Dr. Salinas advocates for children’s education, and she enjoys nature and outdoor sports.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from BioMarin - A Collaborative Journey - ROCTAVIAN Patient & Provider Perspectives
2025-05-13 13:00 - 14:00
Date: Tuesday, May 13th, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TOPIC:
A Collaborative Journey – ROCTAVIAN Patient & Provider Perspectives
OBJECTIVE:
Join us for an insightful webinar exploring the real-world experiences of patients and providers with ROCTAVIAN. Hear firsthand accounts of the treatment journey, from initial consultations and administration to outcomes and quality of life changes. Discover how collaborative partnerships between patients and healthcare professionals are shaping the future of Hemophilia A patients. Learn about practical considerations, clinical insights, and the empowering potential of ROCTAVIAN.
AUDIENCE:
Providers and decision makers
SPEAKERS:

Andrea Buxton, APNP, Family Nurse Practitioner
A patient with severe hemophilia A who has been treated with ROCTAVIAN

Andrea began working as a Nurse Coordinator at the Hemophilia Outreach Center (HOC) in 2014, and in January 2023, she began serving as HOC’s first Family Nurse Practitioner. Since starting at HOC, she has led several initiatives including the administration of gene therapy (both Hemgenix and Roctavian). She currently sits on the Region V-West Regional Council and Regional Gene Therapy Working Group and has served as the ATHN Community of Practice Regional Chair. Prior to her time at HOC, she worked as an ICU nurse and hospital supervisor at St. Mary’s Hospital in Green Bay, WI.

🟥 Member Event : 2025 Physical Therapists CE Conference
2025-05-14 - 2025-05-16
Date: May 14 – 16, 2025
Location: Phoenix, AZ

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

🟦 Non-Member Event : PARTNERS - Basic Partners Program for Social Workers
2025-05-19 - 2025-05-21
Date: May 19th – 21st
Location: Indianapolis, IN

🟦 Non-Member Event : ISTH Congress
2025-06-21 - 2025-06-25
Date: June 21st – 25th
Location: Washington, DC

🟥 Member Webinar : Hemophilia Alliance Presents - Washington Update Webinar
2025-06-26 13:00 - 13:30
Date: Thursday, June 26th, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TITLE:
Washington Update
SESSION OBJECTIVE:
Come to hear the latest on actions in Washington that could impact your HTC and your patients – from 340B reform and federal funding for hemophilia programs, to Congress’ “One Big Beautiful Bill” and how it could lead to people with bleeding disorders losing their Medicaid or ACA health coverage. We’ll answer your questions and give you tools to advocate for your center and patients.
INTENDED AUDIENCE:
All HTC staff
SPEAKERS:

Johanna Gray and Miriam Goldstein, Hemophilia Alliance Federal Policy Advisors, Artemis Policy Group
Dean Hindenlang, PhD, Hemophilia Alliance Vice Chair

Johanna Gray serves the Hemophilia Alliance as a federal policy advocacy consultant. She has more than a decade of experience in health policy and government relations, working with clients to develop and implement successful advocacy strategies involving Congress and federal public health agencies. Johanna’s clients include patient advocacy groups, physician specialty societies, and associations of specialized treatment centers.
Johanna’s expertise in health policy ranges from the broadly applicable private insurance market reforms included in the Affordable Care Act (ACA) to the specifics of Medicare reimbursement for particular physician services. During the ACA negotiations, Johanna led a coalition of seventy patient advocacy groups and other supporters, which successfully advocated for the elimination of lifetime limits on private health insurance in the law.
Having began her career as an intern for then-Senator Barack Obama, Johanna held several policy analysis and advocacy positions before joining CRD. Johanna received a Master of Public Administration and Certificate in Health Services Management and Policy from the Maxwell School at Syracuse University and a B.A. in Public Policy Studies with honors from the University of Chicago.

Miriam Goldstein joined the Artemis Policy Group as a Senior Policy Advisor in August 2024 after more than seven years at Hemophilia Federation of America. Miriam focuses on federal and state policies impacting patient access to coverage, access to care, and affordability. Over the course of her legislative and regulatory work, Miriam has developed expertise in the Affordable Care Act and insurance reform, Medicaid eligibility and program requirements; and other keystones of the health policy landscape.
Before her time at HFA, Miriam worked as an attorney in private practice and with the US Securities and Exchange Commission. Miriam earned her J.D. degree from the University of Pennsylvania and her B.A. in history from Yale. She is admitted to practice law in D.C. Miriam lives in Arlington, Virginia, and in her free time can often be found cycling on local bike trails with her husband Dave.

Dean M. Hindenlang has served the nonprofit and government sectors for almost 30 years, focusing on strategic planning, administrative oversight and governance, and coalition-building through an equity-based lens. As Director of Public Policy and Strategic Initiatives with Cascade Hemophilia Consortium, his work focuses on coalition-building while helping ensure that individuals needing assistance are advocated for in community and government-based capacities. He is a proven leader in assisting members of marginalized and underserved communities.
Mr. Hindenlang holds a Ph.D. in Public Policy and Administration, completing his doctoral dissertation on equity in community-based programming. He has a Master of Public Administration, a Master of Science in Marketing and Communication, a Master of Healthcare Administration, and a bachelor’s degree in English. Additionally, he serves as an adjunct professor, doctoral faculty methodologist, and subject matter expert at Franklin University. He also offers undergraduate instruction on social justice and cultural awareness at Southern New Hampshire University.
As the Director of Public Policy and Strategic Initiatives, Dean serves Cascade HC by engaging local and state authorities, as well as elected officials, on matters of public policy actions, projects, and patient education and advocacy.

🟦 Non-Member Event : PARTNERS - Basic Partners Program for Non Clinical and Administrative
2025-07-16 - 2025-07-17
Date: July 16th – 17th
Location: Indianapolis, IN

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Octapharma - Review The Clinical Benefits of wilate®, Highlighting The Benefits vs Current vWD Therapies
2025-07-22 13:00 - 14:00
Date: Tuesday, July 22nd, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TOPIC:
Review the clinical benefits of wilate®, highlighting the benefits vs current vWD therapies.
OBJECTIVES:

Understand the attributes of wilate® for vWD: 1:1 ratio which mimics the physiologic activity of vWF and FVIII and the synchronous decay curves, which facilitates factor activity monitoring.
Understand the absence of vWF or FVIII accumulation when using wilate® during surgery and prophylaxis.
Review the only product approved for children older than 6 years and adults with any type of vWD and under any clinical circumstance.

AUDIENCE:
All HTC Staff
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 - Big Bill, Big Insurance Impact Webinar
2025-08-12 13:00 - 14:00
Date: Tuesday, August 12th, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TITLE:
Big Bill, Big Insurance Impact – What do HTCs need to know now about coming health insurance changes and how to prepare?
SESSION OBJECTIVE:
The One Big Beautiful Bill Act and other Washington policies are reshaping the insurance landscape for HTCs and their patients with Medicaid and ACA coverage, starting as soon as later this month! Please join The Hemophilia Alliance for this essential new webinar series, kicking off with a comprehensive overview of the coming policy changes. We will also provide strategies for HTCs to start to prepare and advocate to help patients maintain vital coverage. Future sessions will tackle specific policy and HTC operational challenges in detail.
INTENDED AUDIENCE:
All HTC staff
SPEAKERS:
Johanna Gray, Hemophilia Alliance Federal Policy Advisors, Artemis Policy Group

Johanna Gray serves the Hemophilia Alliance as a federal policy advocacy consultant. She has more than a decade of experience in health policy and government relations, working with clients to develop and implement successful advocacy strategies involving Congress and federal public health agencies. Johanna’s clients include patient advocacy groups, physician specialty societies, and associations of specialized treatment centers.
Johanna’s expertise in health policy ranges from the broadly applicable private insurance market reforms included in the Affordable Care Act (ACA) to the specifics of Medicare reimbursement for particular physician services. During the ACA negotiations, Johanna led a coalition of seventy patient advocacy groups and other supporters, which successfully advocated for the elimination of lifetime limits on private health insurance in the law.
Having began her career as an intern for then-Senator Barack Obama, Johanna held several policy analysis and advocacy positions before joining CRD. Johanna received a Master of Public Administration and Certificate in Health Services Management and Policy from the Maxwell School at Syracuse University and a B.A. in Public Policy Studies with honors from the University of Chicago.

🟦 Non-Member Event : NBDF BDC
2025-08-21 - 2025-08-23
Date: August 21st – 23rd
Location: Denver, CO
