Hemophilia Changemakers 2023 Series

Reinforce Accountability. Reimagine Care. Redefine Journeys.

24 
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2023

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Hemophilia Changemakers 2023 Series

Reinforce Accountability. Reimagine Care. Redefine Journeys.

Three virtual events, taking place in June, September & November

Event 3

Co-creating Calls-to-action That Drive Fundamental Change

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

November 7, 2023

Register now for free
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1000+

Attendees

50+

SPEAKERS 

72+

networking hours

250+

EXHIBITORS

Creating connections. Confronting challenges. Catalyzing change.

The global hemophilia ecosystem continues to evolve at great speed. Cohorts of patient groups, providers, policymakers, scientific experts (HCPs), and drug developers are reimagining treatment and care, and redefining patient journeys in their regions. However, without guaranteed equity of access to the best treatment and care on a global scale, and a place to share and compare successes, scientific innovation will continue to leave people behind. In 2023, we are convening the hemophilia community again to build upon the momentum of last year’s Advocacy in Hemophilia Series. It is time to evolve and equip current changemakers and engage and empower the next generation. 

 

Reuters Events Hemophilia Changemakers 2023 Series – in partnership with Sanofi – will consist of three virtual events in June, September, and November. We will bring together esteemed thought leaders to discuss policies, practices, and outline collective and individual calls to action that can positively impact all those living with hemophilia and rare diseases. We aim to foster shared learning, examine the role of accountability in improving standards of care, and generate demand for optimal and sustainable treatment for all. 

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Examine unmet needs, globally and locally, and assess and redefine a holistic strategy for equitable access to information, diagnosis, treatment and care

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Hear predictions for future healthcare trends and innovations; and create a visionary design for the future of hemophilia and rare disease that disrupts current thinking

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Focus on key ethical and implementational challenges requiring consideration, as the hemophilia community moves toward a new paradigm.

"The hemophilia and other bleeding disorders community is experiencing new medications for better and more effective treatment of patients. Scientific evidence, HCPs' experience, and data are available. It is up to the leaders of this community to adjust to the speed of progress and effectively advocate to get decision makers to think about equitable treatment for all."

— Cesar Garrido, President, The World Federation of Hemophilia

REGISTER FOR THE THIRD EVENT OF THE SERIES NOW
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Attend this series and join a global network of hemophilia changemakers across these important topics

We're pleased to bring you our best agenda yet! Listen live to all of the sessions below free of charge if you are an employee of a pharma, biotech or payer organization.

EVENT 1


Generating Optimal care for Women and Girls with Hemophilia



10:15AM – 11:00AM (CET) · TUESDAY, 12TH OCTOBER

Equity of access in hemophilia,

May 25

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.


 

• Nathalie Moll, Director General at EFPIA

EVENT 2


Unifying Pain and Mental Health Management to Improve Standards of Care


10:15AM – 11:00AM (CET) · TUESDAY, 12TH OCTOBER

Building the future of hemophilia by design,

July 20

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.



• Nathalie Moll, Director General at EFPIA

EVENT 3


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



10:15AM – 11:00AM (CET) · TUESDAY, 12TH OCTOBER

Crafting a path that leaves no one behind,

October 26

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.




• Nathalie Moll, Director General at EFPIA

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Series Co-Chairs and Program Advisors

Find out who's speaking at the event

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:

Find out who's speaking at the event

Baiba Ziemele

Latvia Hemophilia Society

Chairwoman of the Board

Program Co-Chair & Panelist

Cesar Garrido

The World Federation of Hemophilia

President

Honorary Chair and Panelist

Clive Smith

The Haemophilia Society

Global Leader in Hemophilia & Chairman Of The Board

Keynote Speaker

Chris Bombardier

Save One Life

Executive Director

Honorary Chair and Panelist

Tirsa Carcamo Bonilla

Honduran Hemophilia Society

Project Lead

Program Co-Chair & Panelist

Trudy Nyakambangwe

Child and Youth Care Zimbabwe

Founder

Panelist

Alaa Hamed

Sanofi

Global Head of Medical Affairs Rare Diseases

Panel Moderator

Register now to hear from these hemophilia leaders
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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

10:15AM – 11:00AM (CET) · TUESDAY, 12TH OCTOBER

ACCESS

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

• Nathalie Moll, Director General at EFPIA

STAKEHOLDERS

10:15AM – 11:00AM (CET) · TUESDAY, 12TH OCTOBER

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.

 

• Nathalie Moll, Director General at EFPIA

POLICY

10:15AM – 11:00AM (CET) · TUESDAY, 12TH OCTOBER

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.

• Nathalie Moll, Director General at EFPIA

Register for this free event series now
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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.

Track 1
Track 2
Track 3

Agenda

10:15AM – 11:00AM (CET) · TUESDAY, 12TH OCTOBER

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

Time • Day

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

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Agenda

The agenda will be timed in due course. Times and speaker allocations are provisional.

Track 1
Track 2
Track 3

TRACK_NAME 

Time • Day

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.

Time • Day

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

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Join 400+ attendees from across the global hemophilia community

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 to join the event series now
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EVENT 2: Building the Future of Hemophilia by Design

Disrupting current thinking to advance new paradigms for delivery of care and access

September 15, 10-11:30 a.m. ET


The second event in our 2022 series will bring global advocacy leaders together with a renowned medical futurist to generate actionable ideas about how to build the future of hemophilia by design – not by chance. By examining future healthcare trends and innovation, disrupting current thinking, and devising new strategies to ensure policy keeps pace with innovation, this event aims to advance solutions to the global hemophilia community’s most pressing needs.

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.

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"Reuters Events Pharma 2021 is where we redefine what the pharma industry can do."

— Ester Banque, Senior Vice President

Join this free online event series to help create a future of equitable delivery of care for all.

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