世界血友病联盟(WFH)The World Federation of Hemophilia (WFH)

世界血友病联盟(WFH)The World Federation of Hemophilia (WFH)  www.wfh.org
世界血友病联盟(WFH)是一个国际间的非营利组织， 主要对人类的血友病及相关的出血性疾病进行介绍、改善及保持关注。
世界血友病联盟是由一个叫 Frank Schnabel 的人于 1963 年建立的。他出生于华盛顿， 生活在加拿大的蒙特利尔，患有严重的血友病，虽然他的童年饱受反复出血及没有有效的治疗之苦，但在母亲的鼓励下最终获得了大学学位。在帮助建立了加拿大血友病学会后，在Frank的不断努力下，国家血友病学会 1963 年在哥本哈根举行，自此世界血友病联盟诞生。 自从第一次会议以来全世界血友病的病人及医生联合起来不断改善血友病的状况。Frank死于 1987 年。
联盟最大的贡献是帮助数以万计的生活在比较贫穷的血友病病人和家庭过上正常人的生活。联盟的第二位主席 Charles Carman，一位同样患有严重血友病的美国商人，在1990 年发起了一个重大计划。这个十年计划的目标是努力帮助全世界的血友病病人。这本身就是一个令人危惧的尝试， 没有廉价的重组制剂及遗传上的治疗是不可达到的。 但是给予主席勇气及信心的是来自许多国家的医生及科学家的努力，结果不久就达到了目标。
目前联盟的主席是爱尔兰的 Brian O'Mahony,于 1994 年当选，他亲眼见到了联盟的巨大变化及在发展中国家的影响。在他的指引下，联盟扩大了内容在提高发达国家及发展中国家对血友病病人的关心上做了很多工作。WFH 鼓励已有较好血友病条件的国家向条件缺乏的
 
21 国家传递知识和技术，加强联盟团结。WFH 也在诸如血液制品的安全供给等关键问题上发挥重要的作用。
现在联盟已成立了 40年，WFH 已成为出血性疾病组织的国际间代言人，其成员已遍及
超过 100 个国家，是世界卫生组织的正式成员。

WFH Strategic Plan: Moving Forward
The next three years, building upon a record of success
When the WFH undertook an in-depth strategic planning process, it was to guide the future work of the organization. The resulting plan detailed a vision for improvement to achieve our collective goal of achieving Treatment for All. As with any strategic plan, it is important it does not remain on a shelf, but rather it be actively used to guide an organization as well as assess progress along the way. This spring the WFH Executive Committee carried out a comprehensive review to assess progress as well as to identify areas that have changed or emerged since 2006.

Across the spectrum, we have made significant progress toward achieving our goals. The strategic themes within the plan have provided a concrete framework to advance treatment through a methodical and quantifiable approach. The outcomes of the first three years have served to validate our development model. As we looked to the next three years, we concluded that the core areas of the plan should remain:

Improving treatment in emerging countries
Ensuring continued development and sustaining treatment where it is already well established
Enhancing access to treatment for von Willebrand disease, rare factor deficiencies, and inherited platelet disorders
Sharing knowledge and building capacity through information exchange and training
Promoting access to safe and improved treatment and cure-related research
Expanding and diversifying our financial base
Enhancing and adapting the WFH organization
However, we also recognized that there are additional challenges and opportunities for the WFH in the coming years, which we must incorporate. Most notably these include:

Adapting our work by using new and advanced applications of technology to enhance our publications and communication strategies
Preparing for the celebration of the 50th anniversary of the WFH in 2012
Developing programs targeted to engage and train the next generation
Assessing and enhancing our external collaborations
Technology applications
The WFH will be seeking to exploit the many technological advances in the ways people communicate in the 21st century. Making use of some of today’s most popular communication devices and technologies (e.g., videos, podcasts, new media such as blogs, social networking, electronic games, mobile applications, etc.) will allow the WFH to spread the most up-to-date information in a range of user-friendly formats, reaching, and bringing together new audiences for our work. As a first step, the WFH utilized an online social networking campaign in conjunction with World Hemophilia Day 2009. We look to build upon this experience and find innovative ways to adapt technology to enhance WFH programs, publications, and events.

50th anniversary
In 2012 the WFH will launch its 50th anniversary celebration. This significant milestone in our history deserves special recognition. The preparations and events surrounding the anniversary will involve all aspects of our organization. The 2012 Congress in Paris will be the public platform to launch the celebration — a time of reflection, celebration, and an opportunity to build for our future. A series of communications tools, fundraising initiatives, and special events will be planned allowing each of our stakeholder groups to take part.

The next generation
The first three years of our strategic plan focused on building our global family to include more fully those with von Willebrand disease, rare factor deficiencies, and platelet disorders. We now recognize it is time to focus additional programs on the next generation of leaders, both within our national organizations as well as at the global level. The WFH will be looking to expand upon our youth programs to ensure a future generation is ready to assume the mantle of leadership. Through greater involvement of our youth, we will guarantee continuity, build greater unity among our global family, and perhaps most importantly, capture the innovative and creative ideas they have to offer.

External collaborations
Forming strategic partnerships is fundamental to our work. Although the WFH is the cornerstone of global development, we constantly are reminded that we cannot do it all alone and that the WFH is also part of a large global network that includes corporations, governmental and non-governmental organizations, medical and scientific societies, and individuals dedicated to improving treatment. We will undertake a strategic review of all the various stakeholders with the end goal of developing a plan to reach out and engage them as partners in our work.

As we move forward together, we will continue to review, evaluate, and adjust our plans. Thank you for your support and as always please continue to share with us your ideas on how we can improve upon our work.

Mark W. Skinner
WFH President
Hemophilia World, August 2009


The World Federation of Hemophilia - A History
1960s: Beginnings
The World Federation of Hemophilia (WFH) was established in 1963 by Frank Schnabel, a Montreal businessman born with severe hemophilia A. His vision was to improve treatment and care for “the hundreds of thousands of hemophiliacs” worldwide through a new international organization.

From a base of six national hemophilia societies, the Federation grew rapidly. It held world congresses every two years and created a global network of healthcare providers, national hemophilia associations, people with hemophilia and their families. At the 1964 WFH congress in Amsterdam, the structure of the new organization was defined with a constitution and an executive board.

The WFH reached a turning point in 1969 when the World Health Organization acknowledged the Federation’s growing international reputation and established official relations. The two bodies began working on joint projects.

1970s: The WFH expands its activities
The WFH introduced the International Hemophilia Training Centre program in the 1970s, offering numerous fellowships and workshops to medical professionals from the developing world.

Thailand was one target country; the WFH worked with Professor Parttraporn Isarangkura to promote progress in national hemophilia care. Under her direction the Bangkok centre became a major venue for training on how to provide maximum treatment benefits with limited resources.

The 1970s were also the decade of new products and opportunities, enabling home treatment and the use of prophylaxis to prevent bleeding — for those who could afford it. Then tragedy struck.

1980s: AIDS hits the hemophilia community
The AIDS crisis struck in 1982 and the following year Dr. Bruce Evatt presented data to the World Congress in Stockholm connecting HIV infection in hemophilia patients and plasma-derived treatment concentrates. The WFH set up the World Hemophilia AIDS Centre with the Los Angeles Orthopedic Hospital to provide rapid access to vital information about the disease. AIDS contracted from HIV-contaminated treatment products swept through the hemophilia community. Among the victims was Frank Schnabel, who died in 1987. Until the end, he reaffirmed his vision with the words: “We are going to emerge victorious.”

To prevent any recurrence of the AIDS tragedy, the WFH set up a system of international groups and activities to monitor the safety and supply of hemophilia treatment products.

1990s: A decade of change
Many changes followed the death of the WFH’s founder. Business professional Charles Carman was elected president in 1988 and introduced important management structures. A 10-year plan was launched in 1992 and the funding base was broadened with new sponsors.

Brian O’Mahony, an Irish medical laboratory scientist with severe hemophilia, took over in 1994. He brought together the WFH’s Executive Committee and Council as one body composed equally of doctors and people with hemophilia. A modified constitution was adopted in 1996.

Greater access to improved products, self-treatment, and prophylaxis showed up the stark differences between the developed and developing countries. Under O’Mahony, the WFH focused its efforts more on the developing world, with programs that would help countries to help themselves.

One major step was the introduction of twinning programs in 1994-95 to link hemophilia organizations and treatment centres in developed and developing countries. By 2003, the WFH was helping more than 40 twins arrange training, workshops and other skills transfer activities.

Also during the mid-1990s, healthcare development programs and publications were expanded to include public affairs, data and demographics, and humanitarian aid. Twinning, humanitarian aid, medical training, data collection and other programs continued to grow.

A project in Chile represented the WFH’s first major success in achieving rapid and significant improvement in hemophilia. The WFH brought together what came to be called the “winning coalition.” Industry donated product; the Ministry of Health established a national hemophilia program, a key treater co-ordinated the program’s implementation; others received specialized training; and the patient organization carried out an educational and advocacy role. The WFH served as a catalyst and adviser. The lives of Chilean hemophilia patients changed dramatically in five years and the “winning coalition” model has been adapted successfully to other countries.

2000s Closing the GAP
On World Hemophilia Day, April 17, 2003, the WFH launched the Global Alliance for Progress (GAP) in hemophilia. The 10-year health development initiative aims to greatly increase the diagnosis and treatment of people with hemophila in about 20 developing countries. GAP is building on existing WFH hemophilia care projects in 60 developing countries and initiating new programs in many more places.

Brian O’Mahony ended his term in 2004 and Washington attorney, Mark Skinner, was elected the new WFH president. Skinner has had extensive involvement with the bleeding disorders community, fundraising, and advocacy for improved safety and supply of blood products. “The WFH enjoyed tremendous growth under Brian O’Mahony’s leadership,” says Skinner. “The organization is now at a new stage and I’m confident that my experience will complement his work.”