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ADVOCACY

Advocacy

The World Federation of Hemophilia (WFH) plays a leadership role in global advocacy by convening the global bleeding disorders community to promote equitable access to care and to current and emerging treatments. We leverage global and regional advocacy work to enhance the impact of national advocacy initiatives related to policy, care delivery and procurement.

PACT

The new WFH Path to Access to Care and Treatment (PACT) Program is a 5-year initiative, ending in 2025 designed to improve outreach and diagnosis and increase access to sustainable care for people with inherited bleeding disorders. This will be achieved through training, education, partnerships, in-country initiatives, and evidence-based advocacy

The need

People with bleeding disorders’ communities face many challenges getting access to proper care in many countries around the world. The gap between observed versus expected people with hemophilia is even greater than it was estimated in the past—with only one third of the expected number of people with hemophilia having been identified globally so far. PACT aims to support the global bleeding disorders community by addressing these needs.

Pact goals

The PACT Program aims to:

  • Identify 20,000 new people with inherited bleeding disorders
  • Improve access to care through the training and education of patient leaders and healthcare providers on outreach, diagnosis, the management of bleeding disorders, and evidence-based advocacy
  • Increase government support to establish or expand existing national bleeding disorders care programs

Program components

The Program will be implemented through three key components.

The PACT Advocacy Academy provides NMO leaders and patient advocates with the necessary knowledge and skills to carry out successful evidence-based advocacy campaigns, including basic concepts and principles of care, access to therapies and procurement, an introduction to health economics, and the design and implementation of advocacy programs.

Yearly virtual training sessions for healthcare professionals focus on outreach, diagnosis, and the management of bleeding disorders. Ongoing training outcomes evaluation will be carried out to provide an assessment of additional needs and to gauge the capacity for progress.

Tailored 4 to 5-year national access plans include personalized training, and on-the-ground support for outreach and advocacy campaigns to increase support from national governments. Collaboration between main stakeholders—the NMO, healthcare professionals and national governments—will be fostered to maximize the success of these programs.

Mentorship from subject-matter experts for NMOs in target countries support the implementation of national access plans. The duration of these mentorships can be from 6-months to 4-years, depending on local needs.

Global and regional training and meetings (starting in 2022) will serve as a forum for sharing best practices and experiences on evidence-based advocacy between community leaders. These collaborative forums will bring together NMO leaders, healthcare professionals and government representatives to promote dialogue and increase engagement among stakeholders.

The WFH is looking for volunteer subject matter experts to serve as WFH PACT Program mentors for NMOs in target countries and to support the implementation of their national access plans. 

OBJECTIVE

The main objective of mentorship is to provide guidance and expertise to WFH NMOs in one or more of the thematic or organizational capacity areas listed below to maximize the impact of their PACT national access plans.

DURATION

The duration of mentorship will range from six months to four years and will be defined on a case-by-case basis, depending on local needs and the mentor’s availability.

AREAS OF EXPERTISE

The WFH is seeking mentors with extensive experience and expertise in one or more of the following areas: 

National bleeding disorders programs and care delivery

  • Developing a national bleeding disorders (or hemophilia) program
  • Establishing national hemophilia or bleeding disorders councils or committees
  • Developing national treatment guidelines
  • Establishing hemophilia treatment centres

Advocacy and government support

  • Planning and implementing advocacy campaigns
  • Collecting and using data for advocacy
  • Understanding health economics and health technology assessments
  • Increasing access to safe therapies and procurement models
  • Managing relations with stakeholders

NMO organizational capacities and leadership

  • Supporting governance and leadership development
  • Enhancing NMO organizational development, including regional representation or chapters
  • Developing strategic plans
  • Writing a project proposal and managing project cycle
  • Developing communications plans
  • Engaging and retaining volunteers
  • Implementing fundraising and resource mobilization campaigns

NMO outreach and educational programs and services

  • Designing and implementing outreach programs to identify new people with bleeding disorders
  • Using digital tools in outreach and/or educational programs
  • Designing and implementing thematic projects related to any of the following:
    • Awareness and education on VWD
    • Youth leadership and engagement
    • Awareness and education on issues related to women and girls with inherited bleeding disorders
  • Designing and implementing other patient or healthcare education and capacity-building programs
  • Developing patient registries and other data collection programs

how mentorship works

All individuals who apply to join the PACT Program as a mentor will receive a letter of acknowledgement and will be added to a database of prospective mentors. A matching process will follow, taking into consideration the mentor’s expertise and the needs of NMOs currently implementing national projects as part of the PACT Program. Once a suitable match is established, the mentor will be contacted to confirm their selection.

Next, an introductory meeting between the mentor and the NMO will be facilitated by WFH staff to discuss the objectives and scope of the mentorship and establish both parties’ willingness to work together. Once a mentorship starts, the WFH will ask both the mentor and the NMO to provide periodic progress reports.

Here are some examples of the type of support a mentor could provide to an NMO:

  • Provide guidance and advice on specific areas as defined in the agreed upon scope of mentorship
  • Review and provide feedback on various documents, policies, and guidelines (either national or internal for the NMO)
  • Present at a meeting or an event as a subject-matter expert

How to apply to become a WFH PACT Program mentor

Interested individuals with demonstrated experience and expertise in one of the areas listed above are invited to send their CV and the completed Mentor Expression of Interest Form to [email protected].

Introducing our 2023 Impact Report!

Discover the transformative outcomes of our initiatives, showcasing the positive change we have contributed to in the global bleeding disorders community.

Participating countries

The online training and education and the global and regional meeting components of PACT are available to all countries, while 20 countries have been selected to work on the development and implementation of national access plans. Countries are selected based on the following criteria:

  • Demographic and economic indicators
  • Strength and commitment of local leadership
  • Level of bleeding disorders care in their healthcare system
  • Overall potential for success

The following countries are enrolled in PACT: Argentina, Bangladesh, Bolivia, Brazil, China, Costa Rica, Egypt, India, Indonesia, Kenya, Malaysia, Mexico, Nepal, Nicaragua, Nigeria, Pakistan, Palestine, Senegal, Vietnam, and Zambia.

The PACT program is supported by funding from:

VISIONARY PARTNER
LEADERSHIP PARTNERS
COLLABORATING PARTNERS

PACT ADVOCACY ACADEMY

The PACT Advocacy Academy provides NMO leaders, patient advocates, and healthcare professionals (HCPs) with the necessary knowledge and skills to carry out successful evidence-based advocacy campaigns. The eight-month course includes the following topics:

  • Key concepts in bleeding disorders, principles of care, and advocacy
  • Key concepts in therapeutic products, procurement models, and tenders
  • Introduction to health economics and health technology assessment
  • Advocacy skills and the design of a campaign

PACT Advocacy Academy participants are selected through an annual open call for applications. The selection process for the 2023 cohort has already been completed. Call for applications will reopen on August 1, 2023, and will close on October 1, 2023.

To apply for the PACT Advocacy Academy, click here.

The PACT Advocacy Academy will take place annually, with the first cohort beginning in January 2022. In the first year, the PACT Advocacy Academy course will be offered in English and will be given to 20 to 30 participants from around the world. Additional languages may be available in future years.

This course is created in collaboration between the World Federation of Hemophilia (WFH), the New York University Robert F. Wagner Graduate School of Public Service (NYU Wagner) and an expert working group.

Each topic will take place over six to eight weeks and includes one self-directed online learning module and two live interactive webinars. An online platform will allow participants to track their progress, refer to previous modules and interact with other participants and mentors.

Over the duration of the course, participants will be required to begin their own real-life advocacy project for their NMO. For participants from PACT countries, this should be aligned with the PACT national access plan.

Certificates of completion from WFH and NYU Wagner will be granted to the participants. PACT Advocacy Academy participants are selected through an annual open call for applications.

If you have any questions about PACT program, please contact the WFH at [email protected].

EVIDENCE-BASED ADVOCACY

Data collected through WFH data collection programs are used to highlight discrepancies in care around the world, and create graphs, charts, infographics, and tools that can be used by NMOs and HCPs to help strengthen advocacy messaging.

Infographics, based on data from the latest Annual Global Survey (AGS) and the World Bleeding Disorders Registry (WBDR), are available for download as an image, a PDF or as slides, and can be used for presentations and advocacy work.

The WFH has developed a user-friendly data visualization system, which includes real-time, customizable queries. This system allows the user to explore and compare recent and historical data to suit all reporting, research, and advocacy needs.

View and download graphs of AGS data developed using our new data collection system.

WFH AGS mini reports are advocacy tools that provide more in-depth perspective and context to AGS data.

Peer-reviewed publications on global data and patient registries relevant to hemophilia and other bleeding disorders are also available.

Stonebraker JS, Bolton-Maggs PHB, Brooker M, Evatt B, Iorio A, Makris M, O’Mahony B, Skinner MW, Coffin D, Pierce GF, Tootoonchian E, The World Federation of Hemophilia Annual Global Survey 1999‐2018. Haemophilia. 2020 Jul;26(4):591-600. doi: 10.1111/hae.14012. Epub 2020 Jun 4.

Iorio A, Stonebraker JS, Chambost H, Makris M, Coffin D, Herr C, Germini F; Data and Demographics Committee of the World Federation of Hemophilia, Establishing the Prevalence and Prevalence at Birth of Hemophilia in Males: A Meta-analytic Approach Using National Registries. Ann Intern Med. 2019 Oct 15;171(8):540-546. doi: 10.7326/M19-1208. Epub 2019 Sep 10.

Coffin D, Herr C, O’Hara J, Diop S, Hollingsworth R, Srivastava A, Lillicrap D, van den Berg HM, Iorio A, Pierce GF. World bleeding disorders registry: The pilot study. Haemophilia. 2018 Feb;e113-e116.

Iorio, A., Stonebraker, J. S., Brooker, M., Soucie, J. M. on behalf of the Data and Demographics Committee of the World Federation of Hemophilia (2017), Measuring the quality of haemophilia care across different settings: a set of performance indicators derived from demographics data. Haemophilia. 2017 Jan;23(1):e1-e7. doi: 10.1111/hae.13127. Epub 2016 Dec 8.

GENE THERAPY ROUND TABLE SERIES

The WFH Gene Therapy Round Table (GTRT) series brings national member organizations (NMOs), patient advocates, healthcare professionals (HCPs), regulators and industry representatives together to share a dialogue on current global developments and the expected challenges related to gene therapy for hemophilia.

Participating

The WFH Gene Therapy Round Table (GTRT) is an invitation only meeting. Approximately 80 participants are invited annually from the international bleeding disorders community, including key scientific experts, regulators, payors, patient leaders and advocates, healthcare professionals (HCPs), scientists, and industry representatives.

Objectives

The objective of this series is to foster a better understanding of the challenges related to the development of gene therapy for people with hemophilia (PWH) around the world. Key challenges and discussions centre around global access to gene therapy, regulatory and financial challenges, the unknowns of gene therapy and long-term follow-up of safety and efficacy. Multi-stakeholder and global perspectives are also considered. The reports from the WFH GTRT have been published.

Gene Therapy Round Table Program Committee

Co-Chairs
Glenn Pierce, U.S.A.
Declan Noone, Ireland

Members
A revolving committee of eight health care professionals (HCPs), and people with a bleeding disorder and/or caregiver make up the program committee.

Previous programs are available here:

WFH GTRT PROGRAMS

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Disclaimer

The information on the WFH website is provided for general information purposes only. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

While every effort has been made to ensure the accuracy of the information on this site, the WFH does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH. The WFH is not responsible and assumes no liability for the content of any linked websites.

Fraud Alert

Unauthorized solicitations – Warning

The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH emails come from @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH at [email protected] or call +1 514-875-7944.

Hemophilia Alliance

Recognizing that training women leaders ensures the diversity our community need to thrive; the Hemophilia Alliance has been a longtime supporter of the Susan Skinner Memorial Fund. They deepened their engagement with the global community through the establishment of the Travel Grant Program, which allows US-based multidisciplinary healthcare professionals the opportunity to attend WFH global training workshops. The wealth of experience and perspective attendees bring back home to their communities helps patients across the country. Their patience and support as we grappled with changing norms in these challenging times gave us the flexibility to meet our community’s needs with revamped programming.

Israel - Tel Hashomer

Year of IHTC designation: 1993

National Hemophilia Center, Tel Hashomer
Sheba Medical Center

Areas of Specialty

  • Adult and pediatric hematology
  • Orthopedic surgery
  • Nursing
  • Physiotherapy
  • Dental care
  • Laboratory diagnosis (not genetics)
  • Psychology

South Africa - Johannesburg

Year of IHTC designation: 2016

Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Physiotherapy

Singapore - Singapore

Year of IHTC designation: 2002

Singapore General Hospital Haemophilia Treatment Clinic

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis
  • Nursing
  • Dental care
  • Orthopedic care (no surgeries)
  • Physiotherapy
  • Psychology

Senegal - Dakar

Year of IHTC designation: 2016

Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Blood banking
  • Physiotherapy

Russia - Moscow and St. Petersburg

Year of IHTC designation: 2010

National Medical Research Center of Hematology of the Russian Academy of Medical Sciences

Areas of Specialty

  • Adult hematology
  • Nursing
  • Orthopedic surgery

Netherlands - Utrecht

Year of IHTC designation: 1996

Van Creveldkliniek
University Medical Centre Utrecht

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hematology
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy/Occupational therapy

Japan - Nara

Year of IHTC designation: 1998

Nara Hemophilia Centre
Nara Medical University

Areas of Specialty

  • Adult and pediatric hematology
  • Orthopedic care and surgery
  • Laboratory diagnosis and Molecular genetics
  • Physiotherapy

Italy - Milan

Year of IHTC designation: 1972

Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Dental care
  • Blood banking
  • Orthopedic care and surgery
  • Physiotherapy
  • Diagnostic assessment of platelet functional defects

India - Mumbai

Year of IHTC designation: 2000

National Institute of Immunohaematology (ICMR) and KEM Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Dental care
  • Orthopedic care
  • Physiotherapy

India - Vellore

Year of IHTC designation: 2000

Christian Medical College, Vellore

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics with antenatal diagnosis
  • Nursing
  • Musculoskeletal management – physical and occupational therapy with physiatry
  • Orthopedic care and surgery
  • Blood banking
  • Dental care
  • Psychology/Social services
  • Antenatal diagnosis

Sweden - Malmö

Year of IHTC designation: 1976

Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and genetics
  • Nursing
  • Dental care and surgery
  • Orthopedic care and surgery
  • Blood banking (on request)

France - Paris

Year of IHTC designation: 1972

Paris Haemophilia Centre (Necker (N) and Kremlin Bicetre (KB) Hospitals)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Dental care
  • Orthopedic care and surgery
  • Psychology and Social services

Egypt - Cairo

Year of IHTC designation: 2015

Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Molecular genetics
  • Blood banking
  • Physiotherapy

Canada - Toronto

Year of IHTC designation: 2018

University of Toronto Hemophilia Centres
St. Michael’s Hospital

Areas of Specialty

  • Adult hematology services
  • Pediatric hematology services
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

Brazil - Campinas, SP

Year of IHTC designation: 2008

Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and molecular genetics
  • Nursing
  • Dentistry
  • Physiotherapy

Belgium - Brussels

Year of IHTC designation: 2013

Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis
  • Orthopedic care and surgery

Belgium - Leuven

Year of IHTC designation: 1972

Hemofiliecentrum Leuven, University of Leuven

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis (not genetics)
  • Nursing
  • Psychology
  • Social services
  • Orthopedic care and surgery

Austria - Vienna

Year of IHTC designation: 1972

Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology

Areas of Specialty

  • Adult hematology

Australia - Melbourne

Year of IHTC designation: 2005

Ronald Sawers Haemophilia Centre

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Orthopedic care and surgery
  • Nursing
  • Dental care
  • Blood banking
  • Psychology
  • Social work

Argentina - Buenos Aires

Year of IHTC designation: 1974

Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)

Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)

Areas of Specialty

  • Adult and pediatric hematology
  • Physiotherapy
  • Dental care
  • Orthopaedic care and surgery
  • Laboratory diagnosis and genetic diagnosis
  • Nursing
  • Psychology
  • Social services