SOURCE: Lupus Foundation of America

Lupus Foundation of America

May 10, 2016 03:00 ET

World Lupus Federation Launched by Global Lupus Groups

200 Lupus Groups From Around the World Will Collaborate on Lupus Education, Awareness and Advocacy Initiatives to Help Millions of People Living With the Autoimmune Disease Lupus

WASHINGTON, DC--(Marketwired - May 10, 2016) - Leaders of lupus patient organizations are joining together to launch the World Lupus Federation (WLF), a new coalition united to improve the quality of life for the more than five million people around the world who are living with the autoimmune disease lupus. The WLF will facilitate efforts among global nonprofit lupus organizations engaged in education, awareness, and advocacy initiatives.

"It is imperative that we unite lupus patient groups around the world to shine a light on the many issues affecting people living with lupus," said Kirsten Lerstrøm, Chair of Lupus-Europe and a member of the international steering committee helping to form the WLF. "Through the coordinated efforts of its affiliates, the World Lupus Federation will increase awareness and understanding of lupus, provide education and services to people living with the disease, and advocate on their behalf."

"Lupus has not received the research funding and public attention needed to address this serious and growing public health issue," said Sandra C. Raymond, President and CEO of the Lupus Foundation of America (LFA). "Through this Federation, lupus organizations across the globe will come together to address issues that affect people with lupus, such as lengthy time to diagnosis, the lack of professional education among health care providers, poor public understanding, and low research funding."

The Lupus Foundation of America serves as the Federation's Secretariat, and is working to establish the Federation on behalf of the nearly 200 lupus organizations from around the world. The international steering committee, which includes leaders of lupus organizations from Argentina, Australia, Canada, Denmark, Finland, Indonesia, Italy, United Kingdom, and the United States, is providing input to develop the Federation's strategic plan and program priorities for the next three years.

With an unrestricted educational grant from GlaxoSmithKline and other supporters, the WLF will embark on an ambitious strategic agenda to put an urgent emphasis on this global health issue and bring greater awareness, resources, and support to help millions of people who are living with lupus.

A key objective of the WLF is to establish partnerships with global and regional health organizations in order to develop public policies and programs that will support patients, their health care providers, families, and caregivers. The WLF initially will focus on raising global awareness of lupus, expanding the capacity of lupus patient organizations to serve people with lupus in their countries, and elevating lupus before government health ministries, the World Health Organization, and other international bodies that deal with public health issues. The Federation also will lead the annual observance of World Lupus Day on May 10. 

"I congratulate all of the participating lupus organizations on the establishment of the World Lupus Federation," said Julian Lennon, Global Ambassador for the Lupus Foundation of America. "This is a significant step forward in the global fight against this dreadful disease. I look forward to continuing to work to bring greater attention and awareness to the needs of people with lupus around the world."

Leaders of lupus groups from around the world have expressed enthusiastic support for the goals and aims of the Federation. "The World Lupus Federation is a welcome step towards raising awareness of this difficult to diagnose, often invisible, and unpredictable disease by bringing together lupus groups from around the globe,' said Chris Maker, Director of Lupus UK. 

"I firmly believe by working together in partnership, we can create, develop, deliver, and provide a caring service to people with lupus," added Barbara Ward, President of the Lupus Association of New South Wales, Australia. Ayu Bisono of Yayasan Lupus Indonesia remarked, "We are in full support, full spirit, so excited, and ready to take an active role in this World Lupus Federation initiative to be able to help and raise the voice, awareness, and equip countries to better serve people with lupus globally." 

Teresa Cattoni de Mina, President of Lupus Association of Argentina, said, "We are very proud that the voice of Latin America joins the voices of every corner of the world, and we are very excited to be part of this great initiative to lessen the suffering of so many people impacted by this unpredictable disease." Tanya Carlton, President of Lupus Canada remarked, "We are hopeful that through the efforts of the Federation, much needed awareness, funding and research will come about in order to help give lupus patients everywhere the healthcare and treatment they deserve and need."

Leaders of the WLF have issued an invitation to all lupus groups throughout the world to join the World Lupus Federation. More information about the Federation is available at worldlupusfederation.org or by email at peters@lupus.org.

About the World Lupus Federation

The World Lupus Federation (WLF) is a coalition of lupus patient organizations, united to improve the quality of life for all people affected by lupus. Through coordinated efforts among its global affiliates, the Federation will create greater awareness and understanding of lupus, provide education and services to people living with the disease, and advocate on their behalf. Members of the Federation's International Steering Committee are: Sandra Raymond, Lupus Foundation of America; Kirsten Lerstrøm, Lupus-Europe; Teresa Cattoni de Mina, Argentina Lupus Association; Barbara Ward, Lupus Association of New South Wales (Australia); Leanne Mielczarek, Lupus Canada; Kirsi Myllys, Lupus Finland; Ayu Bisono, Yayasan Lupus Indonesia; Francesca Marchiori, Lupus Italy; Yvonne Norton and Chris Maker, Lupus UK. 

About Lupus

Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with and a challenge to treat. Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure. Its health effects can range from a skin rash to a heart attack. Lupus is debilitating and destructive and can be fatal, yet research on lupus remains underfunded relative to diseases of similar scope and devastation.

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