VIRTUAL ONLINE CONFERENCE: Reuters Events: Advocacy in Hemophilia

Creating Connections. Confronting Challenges. Catalyzing Change.

November 9th · 9:30am ET / 3:30pm CET

Cesar Garrido President The World Federation of Hemophilia

Dr. Yuri Zhulyov President Russian Hemophilia Society

Amanda Bok CEO European Haemophilia Consortium (EHC)

Chris Bombardier Executive Director Save One Life

Durhane Wong-Rieger CEO and President Canadian Organization for Rare Disorders

Tirsa Carcamo Bonilla Project Lead Honduran Society of Hemophilia

The global hemophilia ecosystem is rapidly evolving. With an explosion in innovation, there are more sophisticated treatments, diagnostics, digital tools, physician resources and educational initiatives than ever before. At the same time, achieving sustainable access to these innovations is a significant challenge that’s exacerbated by an array of geographic and socio-economic factors.

The challenges of today require new thinking on how to face them so that people with hemophilia can pursue living their lives without limitations. With this, one thing is clear – rare blood disorders stakeholders must address these evolving challenges together to help advance higher standards of care for people with hemophilia across the globe.

That’s why Reuters Events, in partnership with Sanofi Genzyme, is proud to bring together leaders of the global hemophilia and rare disease advocacy communities, hematologists, policymakers, patients, payers and regulators to collectively explore sustainable solutions for accessing treatment, care and support.

Register for FREE now

Hemophilia leaders sharing their insights:

Cesar Garrido President The World Federation of Hemophilia

Dr. Yuri Zhulyov President Russian Hemophilia Society

Amanda Bok CEO European Haemophilia Consortium (EHC)

Chris Bombardier Executive Director Save One Life

Durhane Wong-Rieger CEO and President Canadian Organization for Rare Disorders and Chair Rare Diseases International

Tirsa Carcamo Bonilla Project Lead Honduran Society of Hemophilia

Agnes Kisakye Executive Secretary Haemophilia Foundation of Uganda

Dejan Petrović President Serbian Hemophilia Society

Sanofi Genzyme Participants/Moderators:

Vanina Laurent-Ledru Vice-President and Head of Global Public Affairs Sanofi Genzyme

Cecile Le Camus Head of Global Medical Affairs Hemophilia Sanofi Genzyme

Anne-Sophie Chalandon Rare Diseases Policy Head Sanofi Genzyme and Co-Chair EFPIA OMP Working Group

Scott Williams Head, Global Public Affairs, Rare Diseases and Rare Blood Disorders Sanofi Genzyme

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Agenda

The half-day, virtual event will cover these areas and more:

Expediting the path to diagnosis in underserved communities: By exploring strategies for enabling access to genetic testing and patient disease awareness programs, as well as providing innovative tools, resources and education to physicians, payers and policymakers to enable higher standards of care for patients.
Empowering patients to amplify their voice: Working directly with patients to facilitate a patient-led definition of “higher standards of care” and building strong patient leaders that can advocate for public policies, drive sustainable access to innovation and health equity.
Employing strategies for integrating innovation across patient care: By exploring some of the latest innovations in hemophilia care, such as digital tools, shared decision-making, and education initiatives.

Agenda sessions:

Conference Chairperson: Scott Williams, Head, Global Public Affairs, Rare Diseases and Rare Blood Disorders, Sanofi Genzyme

Welcome Address

Vanina Laurent-Ledru Vice-President and Head of Global Public Affairs Sanofi Genzyme

09:30am – 10:00am

Keynote fireside chat: Hemophilia patients need higher standards of care now

Identify the key areas of unmet need for hemophilia patients globally, and understand the divide in care in the developed versus developing world
Define what constitutes a “higher standard of care” for hemophilia patients to better
identify areas of investment
Explore the latest innovations in hemophilia care, such as digital tools, physician resources and education initiatives

Cesar Garrido President The World Federation of Hemophilia

Chris Bombardier Executive Director Save One Life

10:00am – 10:45am

Panel: Driving long-term sustainable innovation and access; overcoming external disrupters and the role of patient advocacy in creating change

See how new collaborations and advocacy can overcome long-standing issues preventing innovation, such as archaic HTA processes and rare disease awareness globally
Ensure digital transformation driven by COVID-19 drives sustainable access, versus widening existing access issues
Empower patients to drive public policy changes that ensure equal access by amplifying their voice, facilitating greater shared-decision-making
Improve patient population education with engagement and involvement from day one in development to drive more effective advocacy

Moderator: Anne-Sophie Chalandon Rare Diseases Policy Head Sanofi Genzyme and Co-Chair EFPIA OMP Working Group

Durhane Wong-Rieger CEO and President Canadian Organization for Rare Disorders and Chair Rare Diseases International

Amanda Bok CEO European Haemophilia Consortium (EHC)

10:45am – 11:00am

Case study: Addressing barriers to access in Russia

Dr. Yuri Zhulyov President Russian Hemophilia Society

11:00am – 12:00pm

Panel: Creating equal access opportunity to innovation and care across every hemophilia patient population

Understand the key barriers across underserved patient populations, particularly low- and middle-income countries, preventing accurate diagnosis
Overcoming bias to deliver on diversity ambitions across trials and care
Discuss initiatives to further deliver the required support and resources needed to provide high-quality care – the role of multi-stakeholder collaborative networks

Moderator: Cecile Le Camus Head of Global Medical Affairs Hemophilia Sanofi Genzyme

Tirsa Carcamo Bonilla Project Lead Honduran Society of Hemophilia

Dejan Petrović President Serbian Hemophilia Society

Agnes Kisakye Executive Secretary Haemophilia Foundation of Uganda

Register for FREE now

300+ attendees from across the global hemophilia community, including:

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 for FREE now

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Get in touch with the Reuters Events team

Karla Sharp Global Project Director Click to email

VIRTUAL ONLINE CONFERENCE: Reuters Events: Advocacy in Hemophilia

Hemophilia leaders sharing their insights:

Sanofi Genzyme Participants/Moderators:

Agenda

Agenda sessions:

300+ attendees from across the global hemophilia community, including:

Here to help

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