8th International Congress on SLE in Shanghai, China
Posted Sep 12 2008 8:55am
Not only does the Lupus Foundation of America (LFA) work on behalf of those with lupus in the United States, but the LFA also works to improve lives on a global level. In May 2007, LFA joined more than 11 countries at the 8 th International Congress onSLEinShanghai,China The purpose … to help unify all the lupus patient groups around the world.
Countries represented included Argentina, Belgium, Canada, Germany, Indonesia, Malaysia, Mauritius, Norway, Spain, United Kingdom and the United States.
The main obstacle facing all lupus groups, regardless of where they’re from: the fact that there has not been any real epidemiological research done on lupus. This lack of research also stands in the way of governmental funding for research, services and programs. On the flip side, global progress has been made in the organizations’ combined support for lupus patients -- despite their different social, economic and governmental conditions.
Lots of stories were shared. For example, Indonesia has noticed that depending upon where you live – whether in a city or a village – a patient’s access to health care varies greatly. Yet in spite of this, Indonesia ’s efforts have had a measurable, positive impact on earlier diagnosis of lupus in their country.
Spain is also making strides. It has launched its first lupus specific magazine and, like Malaysia and the United States, it is also working to create a countrywide patient registry. The goal of this is to further support clinical research purposes as well as better tailor communications and services.
The UK supports 30 regions and has developed educational materials for health care professionals in their country. Norway ’s support has increased and reaches across 17 regions within the country. Germany ’s 84 regional groups provide service to more than 50,000 people nationwide. Canada has recently launched a new website, connecting all Canadians and averaging 20,000 visits a day. Belgium, Argentina and the Philippines have all had success getting the media involved in World Lupus Day activities while generating a greater awareness for lupus in their countries. And, Mauritius has worked hard to bring in international specialists such as David Isenberg, MD from the UK to conduct public education seminars across the country.
Lupus organizations have a way to go still … but fortunately, we’re going to get there together.