World Lupus Federation Created to Be United Front for 200 Lupus Advocacy Groups

Ines Martins, PhD avatar

by Ines Martins, PhD |

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Lupus patient organizations are working to launch the World Lupus Federation (WLF), a new coalition aiming to improve life for the more than five million lupus patients worldwide. The WLF will facilitate the efforts of some 200 national groups to promote lupus education, awareness, and advocacy.

New members of the WLF’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, in Australia), Leanne Mielczarek (Lupus Canada), Kirsi Myllys (Lupus Finland), Ayu Bisono (Yayasan Lupus Indonesia), Francesca Marchiori (Lupus Italy), and Yvonne Norton and Chris Maker (Lupus UK).

They are now working to develop WLF’s strategic plan, and to establish its priorities for the next three years.

“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,” Lerstrøm, the chair of Lupus-Europe and a member of the WLF Steering Committee, said in a press release. “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.”

The Lupus Foundation of America will serve as the WLF’s Secretariat.

“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.”

WLF will use an unrestricted educational grant from GlaxoSmithKline, and other supporters, to launch an ambitious strategic agenda that aims to put an urgent emphasis on lupus awareness and care, and bring greater resources to patients.

“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.”

One of WLF’s key objectives is to establish partnerships with global and local health organizations to develop public policies and programs that support lupus patients, their healthcare providers, families, and caregivers. The WLF wants to elevate lupus before government health ministries, the World Health Organization (WHO), and other international agencies that deal with public health issues. It will also organize annual observances of World Lupus Day, marked on May 10.

“I firmly believe by working together in partnership, we can create, develop, deliver, and provide a caring service to people with lupus,” said Barbara Ward, president of the Lupus Association of New South Wales.

“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,” concluded Chris Maker, director of Lupus UK.