In 2014, the World Federation of Hemophilia (WFH) underwent a comprehensive process to develop its strategic direction for the next three to five years. After consultation with key stakeholders, and an assessment of opportunities and challenges facing the global bleeding disorders community, WFH Board and staff developed a new strategic plan to ensure the continued success of the WFH in our mission to improve care for all people with inherited bleeding disorders.
Over the next three years, we will continue our work to improve care for all those with inherited bleeding disorders, and this plan includes a number of enhancements to address the opportunities and challenges of our changing environment, including access to treatment products.
With new treatments poised to enter the market, and gene therapy likely to become a reality in the near future, the bleeding disorders community is entering a new era of access to care. While there are many unknowns around access, safety, and pricing, one thing that seems sure is that there will be greater supply and variety of products with which to treat those in need.
Because of this, improving access to safe and effective products is an important focus of the new strategic plan. Through our Humanitarian Aid Program and our role monitoring safety and supply issues, we have been involved in product supply and safety for many years. Now thanks to increased humanitarian aid donations and the success of Project Recovery, the WFH is focusing on providing long-term access to treatment in developing countries.
Establishing sustainable care in developing and emerging countries continues to be a core focus of the WFH, using our development model and program tools to bring about long-term sustainable improvements in the delivery of care. In the next three years, we will ensure our programs include people with von Willebrand disease, those with rare factor deficiencies, women with bleeding disorders, inhibitors, and other under-recognized populations, so that the needs of all people with inherited bleeding disorders are addressed. It is also the goal of the WFH to enhance our regional approach in our programs, where appropriate, to identify regional priorities, develop opportunities for countries facing similar challenges to work together, and maximize impact and effectiveness of our programs and activities.
Our role is to empower patient leaders to serve their community effectively. We will support WFH national member organizations’ (NMO) organizational capacity to represent the needs of all the people with inherited bleeding disorders. We will promote leadership development for youth and people with inherited bleeding disorders within NMOs, and support NMOs and patients to better advocate for the improvement of care for people with inherited bleeding disorders in their country.
Information is a powerful tool, and one of the important ways we empower our community is through increasing knowledge and awareness. For healthcare professionals we help deliver effective training and produce relevant educational resources to improve clinical management and patient outcomes. We will develop and share information to help educate people with bleeding disorders and their families. As our community is small and sometimes isolated, it is our goal to capitalize on digital strategies, such as improving online platforms and social media contributions, to increase awareness, provide networking and other learning opportunities.
Our aim is to continue to define and develop standards of care, such as the WFH Treatment Guidelines, to document where the best evidence exists to support clinical practice. Similarly, through our research program, we will fund research to improve clinical management and standards of care. We will continue to enhance and expand our data collection to support advocacy efforts and build the evidence to make the case for better care.
We shall ensure the financial health of the organization and develop sustainable and increasing sources of funding. We will function in an effective and agile way, by assessing our current resources and continuously improving efficiency and effectiveness. We will also capitalize on our digital and online platforms to support all aspects of our work.
During this process, we identified the values that shape our organizational culture and guide our decision-making. People with bleeding disorders are at the centre of everything we do and every decision we make, so patients first is our core value. Our other values are collaboration, integrity, respect, solidarity, and excellence.
Over the next three years, our strategic goals are to:
To learn more about the World Federation of Hemophilia, visit www.wfh.org