Hemophilia Pathmakers 2025 Series

October 23, 2025

Community in Action: Real-World Solutions for Mental Well-Being in Hemophilia

October 23, 2025 | 9:30 – 11:00am ET | 3:30 - 5:00pm CET

In the bleeding disorders community, mental health challenges are often the quietest battles — invisible to most, yet deeply felt by patients, caregivers, and even healthcare providers. While research reveals the significant toll these challenges take, the real story lies in the communities that refuse to let those struggles go unanswered.

This Pathmakers panel, aligned with Mental Health Awareness Month, is designed to amplify those stories — moving beyond statistics and theory to spotlight the real-world solutions transforming lives right now. Guided by voices from National Member Organizations (NMOs), treatment centers, and advocacy networks across the globe, this conversation will illuminate how grassroots connection, peer support, and policy influence are actively closing the mental health gap for people living with bleeding disorders.

Rather than centering on what should be done, this dialogue will focus on what is being done:

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Partnership in Action – How NMOs and treatment centers are working side-by-side to create accessible, stigma-free spaces for mental health support.

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Community as Medicine – How mentorship programs, caregiver circles, in-person events, and digital networks are building resilience and belonging.

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Advocacy with Impact – How targeted efforts have shaped policy to secure funding, expand access, and integrate mental health into care pathways.

This event reflects the shared vision of the World Federation of Hemophilia (WFH) and Sanofi’s Beyond the Bleed platform: to create a global standard where emotional well-being is not a secondary concern, but a central pillar of thriving with a bleeding disorder — sustained by the strength of a connected, compassionate community.

"Mental health in the bleeding disorders community is no longer a silent struggle - it’s a shared journey. From peer networks to policy reform, we’re witnessing a groundswell of action that places emotional well-being at the heart of care. This upcoming virtual event is a testament to the power of lived experience, showing that when communities come together, healing goes beyond the physical - it becomes transformational"

— Cesar Garrido, WFH

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Attend this series and join a global network of hemophilia changemakers across these important topics

EVENT 1

Generating Optimal care for Women and Girls with Hemophilia

June 13, 2023

9:30am – 11am ET | 3:30pm – 5pm CET

This event has already taken place.

Champion voices to raise awareness, eliminate disparities, and develop next best actions

In the first event of the series, topic and advocacy leaders co-designed solutions, shared stories, and examined case studies that could lead to the implementation of a better future for women and girls with hemophilia.

EVENT 2

Unifying Pain and Mental Health Management to Improve Standards of Care

September 20, 2023

9:30am – 11am ET | 3:30pm – 5pm CET

This event has already taken place.

Advance quality of life by fostering a holistic approach to measuring and managing well-being

For the second event of the series, topic and advocacy leaders will discuss the importance of effective pain and mental health management when seeking a standard of care fit for the 21st century.

EVENT 3

CO-CREATE CALLS-TO-ACTION THAT DRIVE FUNDAMENTAL CHANGE

November 7, 2023

9:30am – 11am ET | 3:30pm – 5pm CET

How revolutionary leadership can inspire, catalyze and sustain long-term impact for hemophilia care

In the third and final event of the series, we are harnessing the history of changemaking in the bleeding disorder community to empower and equip the next generation. Revolutionary leaders will share expertise and actions we can take to improve lives for decades to come.

REGISTER FOR THE THIRD EVENT OF THE SERIES NOW

Cesar Garrido

The World Federation of Hemophilia

President

Honorary Chair and Program Advisor

Chris Bombardier

Save One Life

Executive Director

Honorary Chair and Program Advisor

Tirsa Carcamo Bonilla

Honduran Hemophilia Society

Project Lead

Program Co-Chair & Panelist

Baiba Ziemele

Latvia Hemophilia Society

Chairwoman of the Board

Program Co-Chair & Panelist

Global bleeding disorders leaders sharing their insights:

Maria Santaella

Vice President, Research Strategy

National Bleeding Disorders Foundation

Cesar Garrido

President

World Federation of Hemophilia

Mohsena Olath

Program Manager

Hemophilia Association of Mauritius

Carlos Safadi

ONM Vice President

Coalition of the Americas, Argentina

Sare Zulfikar

Head of International Relations

The Hemophilia Society of Turkey

Prem Roop Alva

President

Hemophilia Federation of India

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Event 1 Overview: Equity of Access in Hemophilia

Working towards deeply seated, sustainable change
May 25, 2022

The need for sustainable, equitable access to healthcare is a critical concern for the global hemophilia community – with people in many parts of the world lacking access not only to treatment, but also to basic disease information, diagnosis, and care. This can leave individuals without a diagnosis, sometimes facing intense societal stigmas that prevent them from seeking or receiving care and isolate them from their communities. And, even in high-income countries, social determinants of health such as socioeconomic status, education and area of residence still significantly impact the ability to access hemophilia treatment and care.

Specific to treatment, clotting factor concentrates (CFCs) and their prophylactic use has transformed the lives of people with hemophilia in countries with access to these products. However, nearly three decades after becoming available, CFCs remain largely inaccessible to nearly 75-80% of people with hemophilia in low-income and middle-income countries. And, while new innovations on the horizon hold the potential to further transform lives, it’s critical that all stakeholders work diligently to close the disparity of access.

ACCESS

Progressing towards an access design for the future, which does not discriminate based on geography, financial situation, gender, race, or any other factor.

STAKEHOLDERS

Redefining the access journey and reinforcing a shared responsibility among all stakeholders: Equipping hemophilia advocates everywhere with the support and tools to action real change.

POLICY

Building upon best practices for shaping access policy: Devising ways to positively impact global health equity for hemophilia and rare disease, by driving policy change globally and locally, together.

Register for this free event series now

Event 3 Overview: Co-create Calls-to-action That Drive Fundamental Change

How revolutionary leadership can inspire, catalyze and sustain long-term impact for hemophilia care

November 7, 2023 | 9:30am – 11am ET

The landscape of hemophilia care has evolved greatly over the last few decades. Scientific innovation has unlocked a wide range of treatment options, allowing those living with bleeding disorders to focus less on living with their disease and more on living the life they choose. As the next generation of leaders rise in this new landscape, momentum cannot slow down. The global bleeding disorder community still faces significant barriers to achieving equity across all regions, inclusion of all people, and standards of care that encompass holistic well-being.

In the third and final event of our Hemophilia Changemakers 2023 Series, in partnership with Sanofi, we are harnessing the history of changemaking in the bleeding disorder community to empower and equip the next generation. We will bring together a diverse group of revolutionary leaders to share their expertise on actions we can take to improve the lives of those living with bleeding disorders for decades to come.

Join this event to learn how you can advance changemaking across these key areas:

• Data: Effectively generate, collect, and use data to create change with governments, policymakers, and healthcare systems.

• Inspiration: Use the barriers you break down in your own life to inspire other people with bleeding disorders to speak up and advocate for their care.

• Education: Raise awareness of advancements, gaps in care and advocacy initiatives by utilizing already accessible information, translations and resources.

• Storytelling: Acquire effective and impactful tools to turn your experiences into evidence that drives the future of care.

• Connection: Develop partnering strategies to establish multi-stakeholder work across the bleeding disorder community, between rare disease organizations, and across the health industry to collectively transform care.

Agenda

Keynote

Developing a global access policy that leaves no one behind: Perspectives of a bioethicist

· What is equitable access to diagnosis, treatment and care for all, and is it possible?

· What would need to change to increase global equity of access, and which stakeholders would bear responsibilities for affecting these changes?

· How can the development of new innovations for bleeding disorders be done in a way that centers concerns about equity and justice?

Keynote speaker:

Alison Bateman-House, Bioethicist and Assistant Professor, Department of Population Health, NYU Langone Health

Panel

Pioneer sustainable and equitable access: Advancing positive policy solutions and addressing ethical considerations

· Disrupt the status quo with new policy solutions that match community aspiration, are globally inclusive, and ambitiously keep pace with healthcare trends and innovation

· Effectively build support for new policy solutions and work collaboratively with policy makers, to get them in place

· Discuss the ethical consideration at the core of any global policy solution, and explore what hemophilia leaders can do now to implement an equitable design for the future

Panelists:

Chris Bombardier, Executive Director, Save One Life

Tirsa Carcamo Bonilla, Project Lead, Honduran Society of Hemophilia

Masood Fareed Malik, Founder and Advisor, Hemophilia Foundation of Pakistan

Cesar Garrido, President, The World Federation of Hemophilia

Latifa Lamhene, President, Algerian National Association of Hemophiliacs

Brian O’Mahony, Chief Executive, Irish Haemophilia Society

Agenda

Keynote 

Catalyze and sustain long-term impact: Developing calls-to-action that drive fundamental change in the next generation.

• Set the stage for continued progress by looking back on the community’s greatest achievements over the last 50 years.

• Develop region-specific action plans, combining past learnings, current needs and innovative advocacy methods.

• Inspire the leaders of the future through key changemaking tools such as education, storytelling, and data.

• Share strategies for recruiting, nurturing, engaging and empowering the next generation of changemakers.

panel

Revolutionary leadership that stands the test of time: Today’s innovation and tomorrow’s changemaking.

• Set patient, caregiver, advocacy leader, healthcare provider and policymaker calls-to-action for shaping a better future and positive health outcomes.

• Learn how education and storytelling can inspire the next generation of leaders to break down barriers and demand better outcomes.

• Forge the future with data. Explore how you can generate, collect, and use data to enforce change within healthcare systems

• Transform care collectively by building effective partnerships across the healthcare ecosystem, identifying and recruiting new changemaking stakeholders.

Baiba Ziemele, Chairwoman of the Board, Latvia Hemophilia Society and VWD & RBD Committee Member, World Federation of Hemophilia 

Cesar Garrido, President, The World Federation of Hemophilia

Chris Bombardier, Executive Director, Save One Life

Tirsa Carcamo Bonilla, Project Lead, Honduran Society of Hemophilia 

Trudy Nyakambangwe, Founder, Child and Youth Care Zimbabwe

Bringing hundreds of members of the global hemophilia community together annually.

Representatives include:

• Members of the global hemophilia advocacy community

• Members of the global rare disease advocacy community

• Hematologists / Paediatric Hematologists / Hematologist-Oncologists

• Health/Rare disease policymakers and NGOs

• Patients, family members and carers of those affected by hemophilia

• Industry stakeholders in hemophilia and other rare diseases/trade associations

• Payers and regulators

Register Now

Series Supporters

Upcoming events

EVENT 3: Crafting a Path that Leaves No One Behind

Ethical and implementational policy considerations for the future of hemophilia care

December 14, 2022, 10-11:30am ET

To conclude our Advocacy in Hemophilia 2022 Series, we will take a close look at how to advance local, national, and supranational level policies designed to support shifting paradigms, as the hemophilia community continues to innovate for the future. We will bring together a bioethicist and community leaders from around the globe to discuss the criteria required of a global policy framework, and address ethical considerations so that no one is left behind.